From the ex airborne site for all who have met the young fellow
:lilangel:
Chandler’s fight for life
Debbie Biddiss, gives us an inspiring insight into caring for her seven year old son, Chandler
http://www.army.mod.uk/linkedfiles/aff/ ... /afj66.pdf
Being pregnant is one of the most wonderful and exciting times in your life, you make plans for your child and set out an imaginary blue print for that child’s future. When our son Chandler was born,we started a blue print. However, after Chandler contracted meningitis and septicaemia and we learned the devastating news that Chandler had suffered massive brain damage, that blue print was torn up and we had to start all over again.
Chandler was born two months premature. He was registered as a child at risk as his immune system was weak and two months later was rushed into hospital with one of the most deadly forms of meningitis, homercoccal meningitis and septicaemia – a parent’s worst nightmare. The only thing the doctors could say at the time was that Chandler was not expected to live. All I could do was watch and hold my breath, preparing myself for what I thought was the inevitable.
Chandler, against all the odds, eventually overcame the meningitis and septicaemia but at a huge cost. He has Cerebral Palsy, cannot walk or crawl, has problems with communication, cannot form words properly and his sight was badly affected. In the last few years Chandler has also undergone a number of major operations including brain surgery and a hip replacement.
My husband Paul is a member of the Parachute Regiment based at RAF Brize Norton. The chain of command fully understands the unpredictable nature of Chandler’s condition and this support helps us both.
However, balancing work and the responsibility of caring for Chandler leaves us both with little free time.
Other areas that are time consuming are filling in forms for Chandler’s benefits or having to fight for special equipment or respite care so we can have a few hours to ourselves. SSAFA have been indispensable in helping to raise money for equipment and a specially adapted van that the NHS and other agencies could not afford to fund.
We live in Service Families Accommodation – it’s an adapted bungalow that has widened door ways for the wheelchair, special walk-in showers,hoists and an open plan living area which caters not only for Chandler and his equipment but also his four other older brothers. We also have a special sensory room that helps to stimulate Chandler’s sight and improve his communication skills. Chandler has a large number of what Paul calls ‘beasting machines’ in the house that pull and stretch Chandler in all manner of ways to help his flexibility and muscle tone.
The floors are wood laminate so Chandler can push himself along the floor – something he’s particularly proud of!
Most of the day consists of helping to improve Chandler’s physical condition. He has problems with drinking fluids and if he is not given
the correct amount per day he would become very unwell and end up in hospital. Paul and I have to hold Chandler down to get him to
drink but he thinks its fun and fights us! It takes about ten to fifteen minutes to give him a cup and we have to do this up to eight times a
day. Chandler is a very stubborn but cheeky little boy and despite all the disabilities he has to overcome on a daily basis, he is still fully
aware and knows what he wants and does not want in life. He cannot communicate by pointing at an object or telling us what he wants, so
we have to use trial and error until he is happy – this can take time.
Chandler’s brothers are all young carers and muck in with the workload but sometimes the strain can show on the boys. Family days
out are limited due to time constraints and limited access to public places for families with disabled children. We try to give the other
boys equal attention; they are mature for their age and enjoy the opportunity of being involved with their disabled brother. We also
make sure the boys have the right information so that they can explain Chandler’s disability to their friends.
Most of our time and money is devoted to Chandler and improving his quality of life. In any relationship money worries can be a huge
problem, but the additional costs of caring for a disabled child and not being able to work, can put extra strain on the relationship.
Making sure you claim all the benefits you are entitled to can certainly help ease some of the pressures on the family.
Society often thinks of disabled lives as being unhappy and in a culture that views success and failure in materialistic terms, many
perceive disabled children as an extra burden. However, proper care and thought shown by professionals and employers can act as a
catalyst for family stability and help lessen the strain on relationships.
HRH Prince Charles, in his role as Commander and Chief of the Parachute Regiment, wrote to Paul and summed it up ‘When I read
what Chandler and your family have gone though in such a short space of time, it puts ones own problems into perspective.’
Debbie hopes to publish her book A Father’s Love, this year, to make parents who find themselves in the same situation aware of what help
is available and to offer reassurance to others.
30 AFJ | Spring 2007
