Hi I am Jo and I am a Networking Mummies Finalist for 2017 for “Against all Odds”
I am also the mother to three boys. I wanted to share my journey, of creating my business, with you. I have been involved in the disability sector since my sister Bonnie was born with cerebral palsy when I was 18 months old, unfortunately she passed away when I was 7 years old.
I had always wanted to create my own organisation but I suppose I never had the courage to leave a full time, well paid, safe job. However, in July 2015 my twin boys were born at 25 weeks. Oscar weighed 1lb 12ozs and Noah weighed 1lb 10ozs. I remember thinking they were both just so beautiful and perfect.
After they were born we spent the next 30 hours being “normal” proud parents. Friends and family congratulated us. We chose their names and allowed Ben (my 9-year-old son) to choose their middle names. We continued to plan our future as a family of five!!
However, on Friday 17th July 2015, our beautiful Noah lost his fight for life. He lived for just 30 hours. Noah was born with an additional heart problem so his body was just not strong enough to cope. We were still complete strangers to the Premature Baby world and just never considered losing either of our boys was a possibility. So, when a nurse told us that we needed to hold our boy to say goodbye our whole world stopped.
Oscar spent a further 12 weeks in hospital. Oscar had to endure so many invasive treatments including five blood transfusions, he regularly had lines in each limb of his body, daily (sometimes hourly) heel pricks to check his blood gases
When Oscar was three days old he suffered a stroke, which led to him having a grade 4 bleed on the right side of his brain and a grade 1 bleed on the left side of his brain. Thus, Oscar has cerebral palsy (left side hemiplegia). Due to Oscar’s prematurity, he also has chronic lung disease. He is our perfect little miracle.
We have been asked by so many people, how did you cope? The truth is we never had a choice. We had to cope. We had to carry on for Ben and Oscar. However, we would never have been able to do this if it was not for those around us.
Our journey changed all of us, nothing will ever be the same. We will always be THAT family. However, we realised that we can’t change what happened but we can use our experiences to support others to really make a difference.
The boys were my inspiration to push me to create Sociability Care. Sociability Care is a Community Interest Company (non for profit) which supports individuals with disabilities and their families. We reduce feelings of social isolation, promote independence and develop skills. We provide training and guidance to organisations to increase their awareness of disabilities and their responsibilities to safeguarding children and adults.
More recently we have been working on Sociability Care’s new project “Noah’s Star”. When our twin boys were born in we faced many challenges. One of these related to the care of our 9-year-old son, Benjamin. Juggling his needs, coping with the loss of Noah and the constant anxiety around Oscar’s health felt impossible at times.
We spent every moment at the hospital with Oscar which also meant Ben spent many hours and days at the hospital. I will never forget the feeling of guilt and being torn between my boys.
We were lucky we had amazing friends and family that could provide Ben with the respite he needed from the hospital. However, there were still times when Ben spent all day at the hospital, sat at the side of Oscars cot hearing and seeing too much.
We regular observed other families juggling their own emotions, the needs of their sick babies and parenting other children.
Based on our experiences I made the decision that I wanted to develop a service that could reduce some of the challenges for parents.
After lots of planning, talking to other parents and meetings at Birmingham Women’s Hospital I am proud to announce that we have started the development of our new sibling support service. Noah’s Star will provide support for siblings using volunteers to enable parents to spend more time with their babies knowing that other children (the siblings) are being supported.
This is just the beginning and I am confident that over time we can grow this service to support more families. I am so honoured to be able to develop this service and I can’t wait to get started.
Jo-Anne Fisher www.sociabilitycare.org