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)

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?)
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5 comments:

  1. Angelica mom to JesusRTSNovember 13, 2009 at 4:44 PM

    I have the same issue! i wish i had any alone time but then when i really think about it i cant stand leaving them alone. I was doing physical therapy and that was my alone time but it wasnt as fun as i thought because while i was there trying to fix my back i could only think of the kids, was jesus breathing ok? was esmeralda behaving? So i think i will just start enjoying my time with them and like you said we also are doing a whole lot better than we were 6 months ago. :)

    ReplyDelete
  2. CindyNovember 13, 2009 at 5:51 PM

    The time will come, Nicky. This first year is so hard...for us, the second year was when it got better. I encourage you to find someone you can train in Sam's care so you can take 30 minutes or and hour or two to yourself. That made a world of difference for me...and still does!

    Beautiful post!

    ReplyDelete
  3. JacquiNovember 13, 2009 at 8:38 PM

    Can so relate to your wrestling with time - for it to slow, for it to speed up. Contentment is found in accepting each minute for what it brings - but that is a hard earned lesson!

    It took me a long time to trust with Matt - but when I did it really was a blessing. I remember my mom coming to look after him for an hour so I could get my hair done. It was a big moment. You will know when you are ready - I like Cindy's idea of starting to find someone who you can train to understand Sam's needs. It doesn't have to happen overnight but can be a process that takes into account your and Sams readiness!

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  4. AnonymousNovember 16, 2009 at 5:23 PM

    I remember being the same way when Noah was a infant. I hated leaving him. I was scared to leave him but eventually I did and it was freeing. Noah is 3 and I'm still unsure when I leave him but I know I must for my sanity. I am a better mom for it.

    ReplyDelete
  5. NickyNovember 20, 2009 at 10:22 AM

    Thanks for all the encouragement guys...or should I say "gals"! I keep forgetting that this road has been travelled already by so many great moms - I know I have to start "letting go" a little...WOW! Just thinking about it makes my stomach turn :-)

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