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)

Sunday, September 12, 2010

MORAL INTELLIGENCE

On several occasions, over the past few months, I have either read in a blog or e-mail another mom or dad's account of a time when they have felt the sometimes insensitive, other times just plain cruel, disdain of another parent in whatever particular situation they were in, whether it be a shop, restaurant, or wherever. I have always wondered how I would feel when this, seemingly inevitable, experience would happen to us. About three months we came as close to this as I thought we could when unexpectedly running into a "friend" who, for whatever unknown reason, I have not heard from for quite some time. I do know that this friend knows about Sam's condition as we have a mutual friend who i am still occasionally in contact with. When her daughter first spotted Meghan getting out of the car she shouted hysterically "Mom! Mom! It's Meghan." And so-called friend pretended that she was being blinded by the sun and could not see or, apparently, hear what her daughter was saying (an interesting fact I learnt that day as I did not know you could be deafened by the BLINDING sun as well). As chance would have it, we were headed for the same place and so I approached her to greet and ask how she's been, with drooling, shrieking Sam hanging "pouch-style" over my arm, in front of me. Not once during the all of four minute conversation did she acknowledge or even look at Sam, but that could've been due to the excruciating pain she seemed to be experiencing while speaking with me. Yes, it hurt a little, but not enough for me to dwell on for more than a day.

On Tuesday afternoon while strolling with Sam in-arm towards the school gate to collect Meghan, a car stopped alongside me and I heard a friendly "Hallo" from a fellow-mom who also knows about Sam and has always been really kind and interested to hear how he is doing, etc. Her oldest child was in Meghan's class last year. We had just barely begun the conversation when her youngest, about six/seven years old, sitting in the seat next to hear suddenly asked her (while squinting at Sam) "Why does that baby look like a monkey". She replied, "Shame, that's not nice." To which he defended his statement with "But there's something wrong with his eye". Interesting new fact No. 2 - I did not know that monkey's have one eye which sometimes appears much smaller than the other...it's been an educational couple of months I tell you.

I can't say I have ever really thought about what I should say or do if a situation like this did arise - but did not think I would react so utterly poorly, which was that I first stood there looking at young boy, mouth open, eyebrows twisted with the incredible effort of trying to think of something....ANYTHING...to say. Saw Mom's mouth moving and vaguely heard her trying to change topic by asking something else, but only replied "Anyway, have to go now" and turned and walked away. I do so understand that obviously this little boy was not intentionally trying to be rude or hurtful (at least I hope not) or that I could not have expected his mom to turn around and lambast him for a situation which he has never been prepared to deal with but, as nice as what I have always thought his mom to be, I do feel that her reaction (or lack thereof) did not teach her son anything, therefore better preparing him should he one day face a similar situation. Now, I am sure many would challenge that he is too young to "know any better" but I would then beg to differ. Dr Michele Borba (author of Building Moral Intelligence : The Seven Essential Virtues that teach kids to do the Right Thing) says that most parents believe that you can't begin teaching virtues to kids until they are at least in Grade School, but that in fact this should be done right from birth when children are amazingly and intuitively responsive to being "good". Borba also says that parents have a choice which virtues to teach their kids and feels that there are three CRITICAL virtues we need to teach our children to ensure that they become caring and compassionate people, the very first virtue being EMPATHY! The other two, conscience and self-control, are the three virtues which make up the moral core. (Amusingly the following question was quoted as a means of explaining empathy "How do you think this makes Sam feel?".) My nine-year old daughter took it upon herself earlier on this year to find the "right" words to explain to her Grade 3 class what RTS and "special needs" are - I only found out from her teacher a fair while after. Now surely a woman more than four times her age could have thought of something?

Perhaps I have set too high a standard for what kind of reaction I expect...for good reason. I did not really know till I was probably almost in high school what "special needs" was. Digressing a little, quickly - I grew up with two very close cousins who were both born differently abled : my cousin, Gavin, who has Moebius Syndrome (http://www.moebiussyndrome.com) and my cousin, Caron, who has Phenylketonuria (http://www.pkunews.org) and later, just before I turned eighteen, a third cousin, Amy, born with Down's Syndrome (Caron's little sister). We spent heaps of time together then, at the very least, almost every Sunday was spent as a family...and I don't remember anything else other than two smiling, light-hearted, life-loving, child-adoring and good-humoured aunts who made mothering a child/children with special needs look no more challenging than being a mother to any one of us, in fact, they actually made it look like a breeze and only since Sam's birth have I realised how very much I admire both of them for being such wonderful moms - they made caring for differently abled children seem effortless and have most certainly, unawares, become wonderful examples to me.

And, speaking of examples, back to the point (if there actually is still one hidden in all my mumble jumble). I remember going to a shopping centre with my Aunt Alvie and cousin, Gavin, one afternoon when I was roughly about eleven/twelve years old. I remember a boy of roughly the same age as us pointing and making a remark (which always brough an instant rush of anger towards the offender and, just as quickly, a feeling of protectiveness towards Gav. In fact, my sister and I would instantly launch our own attack with our how-dare-you, shame-on-you, now-you-deal-with-us glare). Anyhoo, this boy's mom had the decency to pretend to reprimand the boy by turning him away and leaning over him to, supposedly, give him a talking to but out of the corner of her eye I actually caught having a good old gawk herself. Now, if only I had been just a little bit taller then....(okay, so that same remark would probably apply today as well)...! Thankfully, even before Sam was just a twinkle in his Mommy's eye, I tried to instill in both Meghan and Luke the importance of never making another person, regardless of their physical appearance or behaviour, feel that they are an object to be stared at and/or pointed at. If they do have something they would like to say or ask me about, they can do it in the privacy of either our car or home or whichever surrounding would enable them to find the right words without having a hurtful effect on other human being. Setting an example for our children is one thing...but much like an exam paper, just because you set it doesn't mean you write it...we need to BE the example with our own actions.

6 comments:

  1. I'm sorry you had to go threw this, but even now i'm not sure how or what i would say being in that situation i have had those kinds of moments but i think each time it happens you handle it differantly, you are right we do have to lead by example! *hugs*

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  2. Thanks Angelica - I think now that I've had some time to think about it, I would have a much more worthwhile response. I mean, obviously, loads of people..adults and children...ask about Sam and I always explain about the syndrome in a friendly but informative way, it's just that the conversation has never really begun on such a negative note. As always, a lesson to be learnt...now I am prepared :-)

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  3. Usually you have me in stitches this time I am in tears. So sad that you have had to go through such an ordeal. You know of course that you can never give what you do not have and likewise you can never teach what you have never learned. So if you do not have empathy you can never teach your children, and by the same token if you have no empathy you can never give it. A wise person told me very early on in my journey of "special needs" that the way to handle this is to develop a thick skin. Just yesterday I chatted with Amy's boyfriends younger brother who is constantly being asked questions about his brother and its upsetting him. I told him to tell them we are all different and Jean-Pierre has an extra chromosone that makes him even more different, he was so cute he wrote it down and said "ha that will shut them up for good because they wont know what it means". Thank you for the lovely compliments that means so much to me. We have indeed travelled a long road and overcome many challenges and I for one have never done it alone, it would have been impossible. Everyone in our family have had a share in the lives of our Special Ones and you too made your contribution by caring for them as you always have. It gets easier as you go along to deal with questions, stares and insensitive remarks as your skin thickens. Another wise person said " if you can't love them please don't ever hurt them"..... Buscalia. So next time you see these people maybe you say something like "look at me I look like a tiger and I eat people who mess with my kids". Lots of love

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  4. Dearest Nicky, your story really made me sit down and think hard about the way I model compassion and empathy to my children. I am so sorry for your hurtful experience. Thanks so much for writing it, though - I have linked back here from my blog. I hope many mothers will read this and, like me, be woken up to the importance of modelling empathy and being sensitive to the uniqueness of all human beings. God bless you, my friend!

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  5. We all know that wonderful verse that reads "For I know the plans I have for you declares the Lord...." (Jer 29:11). As I have mentioned somewhere before on Sam's blog, I honestly had a feeling from almost the moment I found out I was pregnant that Sam was going to be fairly "unique"...I journalled about it constantly right through my pregnancy. I truly believe that if it wasn't for experiencing you, Aunty Anthea, and Aunty Alvie loving your children so unconditionally and so passionately, I would not have been able to deal with Sam's condition in the same way. But you both taught me that having a child with special needs is not the end of the world, merely a different, often more appreciative, way of experiencing it.

    Dear Grietjie - thank you for your precious words and, always, wonderful support!

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  6. Hi Nicky, that is very special and I know how it feels to just know in your gut that this child that you are carrying is someone very special, had this with Caron but not at all with Amy......Mothering a special child just makes you see life a whole lot differently to any other experience and wow do you learn so very much. I have always said I now see the world through my childrens eyes and often wish I could live in their world as its as close to perfect as you could get. They know no malice, greed and have no idea how to hurt anyone, they love unconditionally and experience life with such joy and wonder.......they do not know know how to pretend to be anything other that who they are and could care less what anyone thinks of them. Wonderful lessons for us ordinary humans who live our lives by what others think of us constantly and get ourselves bent out of shape if we should not possess all the material things we feel we should have. Their lives are simple in that they just ARE!!!! When I look at Sam and get lost in his eyes I know he is wiser by far than what I will ever be.......and am priviledged to be part of his life.

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