Hear my voice | Sharing a wonderful life with my daughter who has Cerebral Palsy

As part of Carers Week we are hosting the following blog from Siobhan Riordan, a carer who has fought for her daughter Georgina and worked through all manner of challenges. The experience she relates is both inspiring and moving, giving just one perspective on what it is to be a carer:

Georgina2“Georgina is a cheeky, funny character. She loves to make people laugh and has lots of confidence to talk within a group. Our week is full on, from making jewellery, cards, wellington boots filled with plants, doing housework, helping look after a personal assistant’s baby and enjoying coffee mornings at Costa. Her latest enterprise has been running a café at the youth club – this was Georgina’s idea and she was recently given the Jack Petchey Award voted for by the staff and children from the PARC youth club.

“I now feel so blessed I have a beautiful family, personal assistants and a full life because of the help I get. It keeps me strong, allowing me to put back into this world helping with a charity for children with additional needs.

“I had what most people would call the “perfect life” – I was happily married, I had a great job and I had a beautiful son, James, who was two years old. Then on the 29th January 1994 my life took another road on a journey that proved to be very tough, sad and one that I didn’t know existed.

“However, tough as it was it has made us stronger as a family and introduced us to a very rewarding world of not only meeting the most amazing children and young adults with additional needs, but also parents, carers and professionals that enlighten our life.

“Georgina was not due for another two weeks and apparently if I had not demanded help Georgina would not have survived. I always remember the doctor who performed the caesarean operation saying to me, “How did you know the baby had to come out?!” It was purely on the basis of my instincts that I had gone to hospital the previous day as I felt things were wrong.

“Georgina was delivered by emergency section and after many medical mistakes there was a clear error which made the whole situation very sad. This was one of the main areas I had to overcome. I was furious with the doctors for not taking the correct care, but after a time I came to accept the doctors would also have to come to terms with their mistakes.

“My saddest day was meeting the neurologist from Great Ormond street when Georgina was eighteen months old. I will always remember his words, “Georgina may be like a vegetable, unable to sit up, walk or communicate”.

“Looking back that was a turning point for me.  After I got over the shock and the sadness that Georgina was not going to be the daughter I initially wanted, I was on a mission to prove the neurologist wrong. Life was tough for the next two years running from one appointment to another

“Unfortunately, I had my own health problems since the birth, making it hard to keep physically strong. At this stage Social Services became involved and helped me organise personal assistants for Georgina. These Carers became part of our lives, they became our friends, they loved Georgina, and I call them Georgina’s guardian angels.

“When we moved to Great Notley in Essex, both the levels of staffing and facilities at the local special needs schools were not the same as those we had left in the London area and the same care packages were also not available in Essex.  So I had to start all over again in terms of arranging help and schooling, leading to more battles to fight.  Thankfully I managed to get a similar package and was able to carry on.

“A major transitional period was when Georgina reached 18.   I was blessed to meet the right people along the way. I was chosen to be one of the parents as part of a pilot scheme to develop personal budgets for our children. I knew what was needed and developed a plan for Georgina. This can difficult age, as your child is due to leave school and her Social Service package changed but this made the transition very smooth.

“Our religion is a big factor and has helped us all cope as a family with the ups and downs that we have been through. Life can be so rewarding and it is often the little things we appreciate. Georgina shocks us constantly with her achievements. She cannot read or write but somehow we do not care – Georgina does her own writing which looks like shorthand!

“We now have a positive and fulfilled life with our beautiful daughter. I have a brilliant team of personal assistants who understand how the whole family works, in fact they are like an extended family, very passionate and caring with Georgina.

“I now feel this life is a journey, and no one knows what the next chapter will bring. But to get up each morning and hear Georgina say, “I love you mum” makes my day!” 

– Siobhan Riordan