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, November 27, 2009

STANDING STILL........

….that’s what it feels like Sam and I have been doing for the last two weeks….standing, suspended in mid-air, surrounded by a glass bubble which is like one huge, circular tv upon which we watch the world carry on with all its normal daily happenings.

Samuel is not doing great at the moment – his daily sleeping is virtually non-existent and his nightime sleeping is filled with constant “snorking” and sudden gasps for air every time his tiny little airways become obstructed, which means continuously interrupted sleep. So, as Monday’s appointment with the ENT looms, it looks like we are with almost certainty heading for an operation. The thought of his tiny little 3.5 kg body being put under anaesthetic terrifies me, nevermind the RTS-related complications with anaesthetic, we have to believe that this will be the best for our little Sam and so will have to trust in God to keep him safe should we need to go this route.

On a positive note – Sam’s neuro therapy on Monday went great, without Meghan’s rattle-shaking assistance! By ‘great” I mean that the first fifteen minutes was scream-free, which is a major step for us. Sam’s head control does seem to have improved once again, after taking a bit of a dip, and he managed to push himself up completely on his two tiny little matchstick arms, when placed on his tummy (yip – which he still loathes….his arms that is, not his matchstick arms….LOL).

So, we wait in nervous anticipation for the outcome of both the ENT and paed’s appointments on Monday.

“Jesus came to give us abundant life, but not a trouble-free life. Part of the abundance He offers those who belong to Him is the power of his Spirit to overcome what others cannot. As believers, we have the power of the Holy Spirit to help us deal with circumstances differently than non-believers do.”
Joyce Meyer

“…In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33

Friday, November 13, 2009

A TIME FOR EVERYTHING

ALONE TIME FOR MOM

All I needed this morning was a half hour alone, thirty minutes of
peace and quiet to help preserve my sanity. No mom-do-this,
mom-I-need-that, mom-he-hit-me, mom-I-spilled-juice-on-the-couch. Just me, a hot Calgon bath and solitude.

I shouldn't dream so big!

After getting the two oldest off to school, I settled the youngest in front of Barney and said, "Honey, listen closely. Your mommy is going to crack. She's losing her marbles. She's teetering on the edge of permanent personality damage. This is happening because she has children. Are you following me so far?"

He nodded absently, while singing, "Barney is a dinosaur in our imagination...."
"Good. Now, if you want to be a good little boy, you'll sit right here and watch Barney while Mommy takes a nice, hot, quiet, peaceful, take-me-away bath. I don't want you to bother me. I want you to leave me alone. For thirty minutes, I don't want to see or hear you. Got it?"
Nod.
"Good Morning boys and girls..." I heard the purple wonder say.

I headed to the bathroom with my fingers crossed. I watched the tub fill with water. I watched the mirror and window steam up. I watched the water turn blue from my bath beads. I got in.
I heard a knock on the door.

"Mom? Are you in there Mom?"
I learned long ago that ignoring my children does not make them go away.
"Yes, I'm here. What do you want?"

There was a long pause while the child tried to decide what he wanted.
"Um...can I have a snack?"
"You just had breakfast. Can't you wait a few minutes?"
"No, I'm dying. I need a snack right now."
"Fine. You can have a box of raisins."

I heard him pad off to the kitchen, listened as he pushed chairs and stools around trying to reach the raisin shelf, felt the floor vibrate when he jumped off the counter, and heard him run back to the TV room. I sank back into the water.

Knock, knock, knock

"Mom? Mom? Are you in there, Mom?"
Sigh "Yes, I'm still in here. What do you need now?"
Pause "Um...I need to take a bath too."
Right!
"Honey, can't you wait until I'm done?"
The door opened just a crack.
"No, I really need to take a bath right now, I'm dirty."
"You're always dirty. Since when do you care?"
The door opened all the way.
"I really need to take a bath, Mom."
"No you don't. Go away."
He stood in the middle of the bathroom and started taking off his pyjamas.
"I'll just get in with you and take a bath too."
"No! You will not get in with me and take a bath! I want to take my own bath. I want you to go away and leave me alone!" I began to sound like the three-year-old with whom I was arguing. He climbed onto the edge of tub, balancing carefully and said "I'll just get in with you, Mom?"

I started to shriek, "No! That is NOT okay! I want my own bath, all by myself! I don't want to share! I want to be alone!"

He thought for a moment and said, "Okay. I'll just sit here and you can read me a book. I won't get in, Mom, until you're done." He flashed me a knockdown charming smile.

So I spent my morning "alone time" reading One Fish, Two Fish to a naked three year old who sat on the edge of the tub, with his chin resting on his knees, arms wrapped around his bent legs, slight smile on his face.

Why fight it? It won't be long before I have all the alone time I want...and then I'll probably wish I had a lot more together time.

(by Crystal Kirgiss from More Stories for the Heart)

THERE IS A TIME FOR EVERYTHING,
and a season for every activity under heaven;
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
Ecclesiastes 3:1-8

So why the picture of my poor neglected mountain-bike, hanging neglected and cobwebbed in the garage? Because I find myself being a complete victim of time...I am a clock-watcher of note and would love to be able to manipulate time, well who wouldn't? When Sam is asleep, time just can't go slow enough for me...in fact when I am standing at the stove, boiling up his Nestargel (thickening agent) I get a knot in my stomach and think "Please don't let him wake up yet, just another ten minutes...just to finish his milk..." (I mean seriously though - is it just a completely impossible notion that there actually might be a baby out there who has reflux AND allergies? Well apparently it is because I've yet to find a HA and AR baby formula) And then I find myself wishing the time away, to a time when Sam is picking up weight, holding his head up, crying less! And to a time when he is settled enough for us to leave him with Brampies for just thirty minutes so that we can take a quick ride on our bikes and even eventually venture out for a quick bite to eat on our anniversary. I was complaining of this very thing yesterday morning to a friend who had come over for a cup of tea and a croissant...and muffin...and cupcake (and I wonder why, six months down the line, I haven't lost my pregnancy weight yet LOL) while we took turns to eat so that one of us could hold a moaning Sam. As she was leaving she asked me if I did have someone who would look after him, would I leave him? And I said NO!

Danila Liebenberg describes "time" to children, in her book Time For Two as follows :
"Have you ever separated the sections of a naartjie and eaten them one by one? Once you have eaten a section, it is gone. You cannot get it back. Time is like a naartjie - every day has many sections called hours. Just as the sections of a naartjie become fewer when you have eaten a section, hours also become fewer throughout the day. The hours which have been used are gone forever."

And so it made me realise that, as much as what I am always wishing us to a "better" time...so much time has already passed...and we really are already in a better place than what we were six months ago. So no more wishing away my naartjie sections...but rather taking the time to savour the flavour of each and every one, even if there is an occasional pip that needs spitting out! (Elegant, aren't I?)

Thursday, November 12, 2009

PERCEPTION

“The world can be a forbidding place for children, especially if they feel that they somehow don’t measure up. A relatively minor difficulty can easily develop into a crisis of confidence, particularly when a child must listen to constant reminders of his or her deficiencies.”

“I was sustained, though I wasn’t fully conscious of it at the time, by the faith I had developed through my parents’ teaching and example. I believed in a loving God who valued me for the person I was, who – even though I was unworthy – sent His Son to die for me.”

“If your children understand in their hearts that the Creator of the universe loves them personally and has sacrificed His own Son on their behalf, they will enjoy a much healthier self-concept and be far better equipped…”

“As your children grow, any deviation from the norm – in height, weight, hairstyle, skin colour, voice, etc – will be pointed out by their peers and used to embarrass them. Sometimes even adults, who should know better, will play this cruel game. It is your job as parents to counteract these hurtful comments with love. Encourage your children. Remind them of their strong qualities and abilities. Above all, employ Scripture passages such as Luke 16:15 to teach your kids that the misguided values of man are often the very opposite of the values of God : For what is highly esteemed among men is an abomination in the sight of God”

(extracts : James Dobson)

“God does not judge by external appearance…” (Galatians 2:6)

“You created my inmost being, you knit me together in my mother’s womb”
(Psalm 139:13)

Meghan’s Contribution :

“Now faith is being sure of what we hope for and certain of what we do not see.”(Hebrews 11:1)

Wednesday, November 11, 2009

Welcome Payton

Sam and I got together this morning with our good friends, Jacqui and Matt, and also met for the first time new RTS mommy, Tammy, whose little baby, Payton, was born almost two weeks ago. Meeting Tammy brought back many memories and emotions about those first few days after hearing Sam's diagnosis and I cannot believe that this coming Sunday is already six months since Samuel was born.

Jacqui and Matt (and a glimpse of Sam in the top-right corner)

Yeah Yeah! Pose for the camera - just give me a sec..if I turn my hand just a little to the left...it might just fit!



Such a charmer!

The first thing I remember is absolute fear - fear of an unknown syndrome, an unknown path, an unknown future...but most of all...fear of being alone in this RTS-world. Getting to know Jacqui, Lloyd and little Matt, as well as my daily text-buddy, Vickie, has been so crucial to being able to find our way. Everyone wants to....needs to belong somewhere...and having such an instantly close bond to families we basically have not known for very long, has made the transgression from the typically "normal" world we once knew to the still largely undiscovered RTS-world we've become part of, so much easier and even a little exciting. And so we warmly welcome Tammy, Tayla and Payton to our world.


It's also always such a treat to get to see Matt - who is such a precious little boy - and to hear about all the wonderful things Jacqui and Lloyd get up to with their little angel...it makes me want the next six months (or twelve...or eighteen..okay - I'll settle for six) to simply fly by...and yet I am almost scared of missing something new that Sam does or conquers or, in actual fact, any of my children. Just this last week Sam's big brother, Luke, started shaving for the first time (I threatened to post the pic on the blog, but don't want to embarass the poor kid) and I can still remember the day he was born like it was yesterday. I still remember Meghan's first day at "big school", almost two years ago...remember her crying her big blue eyes out, remember the teacher having to pry her finger-by-finger from my leg and holding her in a tight grip while I make a dash for the gate...I remember it like it was yesterday. Oh hang on - it WAS yesterday....okay, well last term at the very least..no...SERIOUSLY! Meg has had some separation issues and right up until last term we would still sometimes have tears in the morning when dropping her off at school. But the passed few weeks, she politely tells us we can go when we start walking her to her class. Let's hope that the first day of Grade 3 doesn't find us regressing.


Anyway, Sam is doing okay and has actually had quite a long nap this afternoon...YAHOOOO...hence me being able to update the blog (what washing, cleaning, cooking???) It's all about prioritising, after all! He is still very intrigued by his little hands, which regularly find their way into his mouth now - yip, even that little thumb. He also holds his rattle for a little longer, so every day there seems to be some type of progress, even though its really teeny, weeny, smidges of baby steps. He is such a character though and is extremely "verbal" and loves his new found vocabulary consisting of (time for creative spelling) goof, bffff, ggggooo(you have to "roll" the g), coo, coof and sometimes a combo, like goof-bffff (don't laugh - him and I often have like ten minute conversations in our newly-learnt Samglish). The other night, after his usual 1am feed, while I was trying to get him back to sleep he lay looking at his (unbeknown to him) sleeping dad who, at regular intervals, let out a rather loud snore. Obviously Sam thought this was an additional Samglish word, so after each snore he would promptly respond with goof, or coo, etc - you get the picture. Although it was quite funny in the beginning, after five minutes it became really old and so I had to ask Chris to please turn over so that I could get Sam to sleep. And something else that I have found absolutely FASCINATING is that Sam "talks" (Samglish of course) in his sleep. I have never heard or seen anything like it, I mean, Luke and especially Meghan talk in their sleep, but they at least waited until they had mastered their language a little more...what a precious little elf he is.


Mmmm..what shall I do today? Oh, I know - lets have a look at my hands - it just NEVER gets old!