"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 specialchildren.about.com 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.
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
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