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...
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 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)

Saturday, February 18, 2012

What Special Needs Parents want from Doctors and Hospitals

"An appreciation of our child as something more than a cost-effectiveness problem.

Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.

Cooperation, not combat.

Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.

More options, not fewer.

If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.

Respect for the power of love.

Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.

An understanding of the preciousness of one more hour, one more day.

Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.

A little respect.

We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.

Get this: You could be wrong!

Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us."

The above is an excerpt I borrowed from Terri Mauro off one of her recent posts following the outrage caused by the atrociously unjust manner in which Amelia "Mia" Rivera's life threatening need for a kidney transplant was dismissed due to her mental disability.

The subject of doctors and their compassion and care (or lack thereof) of patients, especially special needs children, is probably one of my most passionate and infuriating "sensitivities" and I have "sensitivities" by the truckload so that's really saying something.

Since Sam's arrival into our lives we've had to, as with all SN families, encounter too many doctors, specialists, nurses and the likes. The reason for having had so many is not purely because that's how many medical caregivers Sam has needed but also largely due to not always being able to find a caregiver who is not only experienced and clued-up in his/her particular field, but also compassionate, caring, supportive and assertive yet humble enough to lead you confidently towards a particular treatment/medication, etc without stripping you of your power to make that final decision at your discretion. As I've mentioned many times before, we have been blessed to find several specialists to take care of Sam who genuinely are all of these wonderful things, but there have just been too many who either intentionally dismiss several of Sam's issues relating to his wellbeing either because of unjustified ego's or complete indifference to all of their patients.  Or  those who unintentionally dismiss him possibly because they feel his mental disability does not allow him to experience pain/discomfort/fear the same way we do? While I struggle to hold the second group completely accountable for their actions, the first group I believe are bordering on unforgivable.

I have sometimes wondered if perhaps my less-than-assertive manner of speaking and only-slightly-taller-than-a-smurf height might have something to do with why some doctors don't seem to pay much attention to my suggestions/queries or take me seriously because, in all fairness, it is not only doctors who sometimes overlook (pardon the pun) what I have to say. But then I will occasionally notice other "normal" patients being treated the same and it is, in a warped kind of way, reassuring that it isn't just me and/or Sam. There can surely only be two reasons why any one person decides to choose a vocation in medical caregiving : a pure and unconditional love of caring for others and their wellbeing or a pure and unconditional love of money. And only one of those reasons belong to the doctors you want treating your child. The whole situation is frustrating beyond, largely because it will never change. I cannot even begin to imagine the emotional anguish Amelia Rivera's mother must have endured when being told that her precious daughter's life had been rendered "second rate" just because of the different and unique way in which her little brain functions.

I always have and always will continue to make a point of sincerely thanking those doctors/specialists treating Sam who are quite obviously not just driven by the money, and affording them the praise and recognition they righteously deserve.

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