P&O’s Arcadia pulling in to berth at the Alotau port early this morning. Woke my 2 year old niece up and hand in hand we stood at the beach watching this pretty sight before I left to go do my tour guide gig for the day.
Smoked fish and fresh sea weed seasoned with lemon juice and hot baked sago rolls to go with it. Yummy!!! Now that’s my kind of lunch!
I have never really had a close relationship with another human being deemed by society as ‘very disabled’ so I took for granted the physical ability to walk, run, dance, and speak. I also unconsciously took for granted my being ‘normal’ as deemed by society. In my defence, I have always thought of everyone including myself as disable in one aspect or another in terms of capabilities that I never really looked at the obvious disability in terms of physical ability. All that changed when I met Tessa Tuboda, her husband Isaac Kataboi and their one and only son Ralph Kataboi. Tessa is from Milne Bay Province and Isaac is from Sandaun Province. They live with Ralph in my hometown Alotau.
Ralph was born a healthy baby boy on the 13th of December in 2006 bringing much joy to his family. Three days later he developed *Jaundice which should have been a normal ‘mild’ condition for newborn babies where their skin and the white part of their eyes have this yellow tint. Jaundice occurs because the baby’s body has more bilirubin than it can get rid of. Bilirubin is a yellow substance that’s made when the body breaks down old red blood cells. It leaves the body through urine and stool. A pregnant woman’s body removes bilirubin from her baby through the placenta. After birth, the baby’s body must get rid of the bilirubin on its own.
In most cases, babies have what is called physiologic jaundice. It occurs because their organs aren’t yet able to get rid of excess bilirubin very well. This type of jaundice usually appears about 24 hours after birth. It gets worse until the third or fourth day, and then it goes away in about a week. However, Ralph’s condition was much more serious. His skin got more yellowish, he was sluggish, he could not breastfeed and he would arch his back and cry in a very high pitch. Ralph’s bilirubin level was even higher. This rare condition even with phototherapy treatment eventually led to brain damage called kernicterus resulting in *cerebral palsy – a neurological disorder.
Cerebral palsy causes physical impairment by affecting the muscles and the person’s ability to control them. Diagnosis is based on the child’s development over time. Today, nine year old Ralph’s cerebral palsy has made his limbs stiff and awkward. His balance, posture and coordination have been affected. His oral motor functioning has also been impacted. Tasks such as walking, running and speaking are difficult for him. However, he is one of the liveliest children I have ever met. His smile can light up anyone’s dull day accompanied by those happy shining eyes. He loves his ukulele, playing with his friends and his building blocks. He has a big appetite and truly has a larger-than-life persona seeing himself as anything but disable.
I believe he owes this bright outlook on life because of his loving, patient and understanding parents who would go to any length for their son. They decided to not have any more children after Ralph so they could give him all the attention he needed. As Tessa put it, “looking after one disabled child is equivalent to taking care of ten normal children”. But she adds that it has gotten easier the older he gets and with all the training and awareness carried out by Callan Services over the past two years. He loves attending school at Callan Services and enjoys rides in his stroller. He acts his age and prefers being treated his age which is fine by his parents who treat him as they would any normal child.
His parents only concern begs the question of whether or not he would be able to take care of himself in the future should anything happen to them. So they are doing everything they can to help him be more independent. The exact cause of Ralph’s cerebral palsy is unknown or simply assumptions for now. To be able to diagnose the cause, Ralph has to have proper medical imaging (for example, a brain scan) and blood tests. Tessa and Isaac are now raising funds to take him to the nation’s capital for a proper brain scan which will help the doctors diagnose the cause.
A fundraising dance will be held for Ralph at Alotau’s local club Cameron Club on the 23rd of January, Saturday night. Please come along, have fun and support a good cause. Cerebral palsy may be permanent, chronic and incurable but it is manageable. Help Ralph get the treatment and therapy he needs to help manage the effects on his body.
* To read more about what Jaundice is head to http://www.webmd.com/parenting/baby/tc/jaundice-in-newborns-hyperbilirubinemia-topic-overview.
* To read more about cerebral palsy, head to http://cerebralpalsy.org/about-cerebral-palsy/definition/
I have always had this tendency to be nice
Even when I am staring up at the face of an hater
My first reaction would be a smile
I just never found anything good to come out of being so unfriendly
Lately though I’ve become tired of smiling
So now I’m more selective of whose day I’m cheering up with a smile
I’m learning to save my smile for the people who are worth it
I’m learning to keep it real
Real raw genuine smiles only this time around folks!
Check out what to expect should you one day decide to drop by my hometown on a cruise ship 🙂
Sometimes I feel like I have no control over my own life
That fate is cruel and unkind
I admire those with so much faith in God
They relinquish all control easily trusting him to take over the reins
I fight against what I know should be easy sometimes
Mostly because I’d rather test my limits than take the easy way out
This war between good and evil I can never quite understand
To stand on opposing sides and yet find some common grounds on certain matters
Why are we so different and yet so alike?
I’m still struggling to define my own grounds
Some days it’s so clear as the water and some days the water is all murky
But I believe we create our own destinies
I believe even fate is determined by our choices
And what we truly believe in is all that really matters