A POEM FROM CHANDLER
Just We Three.
I smell you momma!
I sense your love,
From your body's warmth.
To your sweet gentle tears,
I was born so small!
Do I look like you daddy,
Will I grow that tall?
I love you too daddy.
I'm special I know,
I'll love you both forever!
For love gives you wings!
I'll live in your hearts.
While in my own world of darkness,
You live in my dreams.
For my world is sentient.
©Copyright January 2003 by Jim Love
Author’s Note: A brave little trooper, Chandler faced his first battle the day he was born. He came into the world two months early, and faced many problems. He had a low birth weight and breathing difficulties; he also suffered a bleed to his brain.
Little Chandler showed his proud parents that he was a born fighter. He managed to overcome the problems he had faced and was finally allowed home. However, two months later, Chandler was unwell and his parents rushed him to hospital where, unfortunately, Chandler was misdiagnosed to be suffering from "Colic" and his parents told to take him home. He continued to be unwell and went into a coma.
He had contracted Meningitis and Septicaemia. This was to be the start of his second battle for life. There were many times that his parents did not think he would pull through. They could only sit and watch their little son fight for his life. But this brave little man continued to fight and prove he had a strong will to live. He won the battle yet again...
Eventually Chandler was taken home by his parents who by now just wanted to get on with their lives and to enjoy their baby. However, this was short lived; Chandler's mum noticed that something was not quite right with his development. He could not sit properly in his baby seat, his little hands were always in a tight grip, and he also had obvious problems with his vision... His mum and dad knew that something was wrong. They wanted answers from the medical people, but nobody would tell them anything...
So they had to conduct their own research via the internet and the libraries. Their own investigations led them to the conclusion that Chandler in fact was a victim of Cerebral Palsy and the Doctors eventually confirmed this. His parents also had to come to terms with the fact that Chandler also suffers from Epilepsy.
Now Chandler is 3 years old and recently been diagnosed with Hydrocephalus, (that means he's got water on the brain...due to the bleed he suffered at birth) Now he's got to face another operation, to relieve the pressure on his brain and help prevent it from recurring. So Chandler and his family have to face yet another battle...
Although Chandler can not physically do what other children do, he is a happy little boy and in spite of his disability he is tries to walk and talk and with a big smile on his face. It's hard to imagine the heartache and emotional stress that his parents have gone through over the past three years. Life, at times, must appear to be one big struggle.
Chandler Update
(by Paul, Chandler's Daddy)
Well it's been over a year since some of you last saw chandler, and much has changed since. Many have asked about his progress from all over.
His first Operation, which you all know about, required a neurologist (Brain Doctor) to cut a small hole into the dead part of his Brain so to relive pressure. At the time it was not known if this operation was successful. It would be another 9 months before Paul and Debbie could breathe a sigh of relief; during that time Chandler had to go rough two other Operations.
One was on his hips, this would be the type of operation you would expect someone in there 80s to go though but due to the fact that the NHS would not provide a proper Wheelchair for Chandler, his hips were becoming dislocated, So Sept 03 Chandler when back under the knife, although Chandler is blind, he is not stupid and knew what was about to happen, when he was being wheeled in, wearing his Para Reg top, the anaesthetist, a South African, attempted to give Chandler gas, his dad warned the anaesthetist that Chandler will fight it.
"Don't worry dad, I have done this for years" as he put the mask over Chandlers mouth the South African let out high pitched yelp. Chandler Bit him and laughed. Once Chandler woke up from the Op he was pissed off; no tears just pure aggression and he let dad know it.
For months after he had to wear a hip brace. Due to the high amount of Drugs Chandler has to take, his teeth, despite always being looked after were starting to decay. So in Jan 04 again he would have to go in the Hospital to have 9 teeth removed in one go. Again he fought the anaesthetist and again he woke up very pissed off.
Chandler may have to have an operation on his spine due to the lack (at the time) of a proper wheelchair, although he now has a proper wheelchair, his spine was curving and at present is being monitored, fingers crossed, all the beastings he has had to prevent this, will have paid off.
Chandler gets regular daily beastings not only for his back but all over. His legs can get very stiff so hips, knees and ankles are regularly worked so to prevent further operations. He would spend up to 2 to 3 hours in a standing frame, wearing foot and leg splints. Then it would be back to the sitting frame for about 2 hours. In the afternoon more beastings but with more hands on approach, stretching the hamstrings etc... At night he would wear his hip brace and night splints, all night.
All this has paid off as a year ago Chandler could not sit without constant support. He can now sit for short periods of time, over time he learnt to put his hands out when he felt he was about to fall, before he would just fall and hit his noggin.(he can now bang out a perfect parachute roll, from the sitting position). As some of you know, Chandler being frustrated would bite himself sometimes until he would bleed. This is because his lack of communication skills. Because he's blind he cannot look or point at what he wants. Because he can not talk he can not tell you what he wants, Paul and Debbie would sometimes have to go though several things before they hit the jackpot. Did he want his music changed, his nappy changed, is he hungry, thirsty? Or does he just want to sit outside to hear the birds sing?
Now Chandler has had some teeth removed, he punches, and not only himself anyone who dares to get close to him, he's landed one or two on his dad a few times and they hurt. Chandler has a long way to go but has so far beat everything life has chucked at him. So what is he doing now? Well, he is sat on his backside showing off his new sitting skill to the chicks and chilling on the beach listening to the sea.