This is caring
In the long run
Suneta from Coventry cares for her 10-year-old son , who was born with an undiagnosed genetic syndrome and requires round-the-clock support . In April this year , Suneta took on the incredible challenge of running the London Marathon to raise awareness and funds for Carers UK .
My husband and I both work full time whilst sharing caring responsibilities for our son , and we also have two other children . I dedicate myself to ensuring our son can ‘ access the world ’ as much as possible and enjoy a good quality of life , despite his complex disability . Born with significant feeding difficulties and problems with swallowing , he was tube fed until the age of seven . He has multiple and severe food allergies , communicates non-verbally , has sensory processing challenges and needs all of his personal care needs to be attended to . All of these factors make social activities very difficult to access . This means a trip to a park , cinema or restaurant ( straightforward for most families ) involves meticulous planning , but we are determined to be a ‘ normal ’ family as much as possible , and ensure that we don ’ t miss out on anything . I believe this is essential to the wellbeing of our other children .
As our son ’ s genetic condition is undiagnosed , his prognosis is also unknown . There are numerous medical and health issues which are unpredictable , which involves a number of medical professionals . A strong network of support from family and work are key . My two other children , aged 12 and 9 , are amazing carers who show him so much love , care and attention on a daily basis . This warms my heart and fills me with pride . The caring role has become a natural part of who they are and their little personalities .
Someone once told me that looking after oneself is like depositing in a bank account , it pays out dividends later . I do believe that to be very true !
I spent most of the first two years of my son ’ s life in and out of hospital with him . Dealing with the uncertainty of his prognosis put a strain on my own mental and physical health . Being told he wouldn ’ t sit , crawl or achieve milestones was difficult . We were told that he wouldn ’ t live past the first few years . How does any parent cope with that being a prognosis for their own child ? I was immensely challenged in terms of my own wellbeing . After the first 2 and a half years , however , his health picked up and we began to see progress . He began achieving milestones that were not expected . This encouraged me and impacted positively upon my own mental health .
6 carersuk . org