Tuesday, 6 May 2014

Hour by Hour, Day by Day

Sometimes it feels like life is playing a really cruel joke. When it is hard to breathe because everything is so incredibly painful all I can do is to start living hour by hour. An accumulation of the devastating news about our key worker, a really difficult genetics appointment, some of my worries about Chloe and not knowing where I fit in this new life has left me struggling. To be honest I have had moments this week when I feared I might never stop crying. Last Sunday morning Chloe helped me snap out of it by asking for food, giving me the most enormous cuddle and telling me I was the Mummy she always wanted . She can't see my tears and I try to make my voice sound happy as I would hate her to worry about me. Worrying to her is a seriously overrated emotion. She often says "you mustn't worry Mummy I'll be alright." She will be but not without a lot of hard work and with me fighting for what she is entitled to. I had hoped that now she is at school I wouldn't have to hold on quite so hard but it seems you cannot relax for a moment.

This week I have been reminded what a complex and unusual case Chloe is. She has no syndrome or illness that resulted in her profound deafness and severe visual impairment. It has taken years of painstaking negotiation and effort to develop a package of support that meets her needs and recognises her potential. At times the journey has felt like a nightmare. The early years were full of hospital visits, trips to London and Bristol and hundreds of meetings in our home. One of the hardest things for me was that none of the experts invading our lives could tell us why this had happened or what to expect for our daughters future. I wanted them to have the answers but no one did. It was really clear that the professionals from the world of hearing loss and visual impairment were not used to working together. It took far too long to agree a communication passport for Chloe which was essential for her well being. In this world of unknowns our Rehabilitation Officer for Visually Impaired Children quietly and calmly took control and saved our family.

Now I have cried my tears I am determined not to give up our wonderful key worker without a fight. The senior managers from Virgin Care are oblivious that their money saving decision will have such a negative effect on my family. They have the power to knock me off my feet and render me speechless but not for long. I have been in touch with the legal team at Sense and under the Deafblind Guidance Devon have a responsibility to provide the family with a lead professional from Integrated Children's Services. To be told our case has been transferred to a general team without specialist knowledge with no warning or consultation is not acceptable. I might be shattered and disillusioned with the system but I owe it to Chloe to speak up. I am bringing in reinforcements and building up my strength day by day. Its the least I can do for my beautiful girl who despite all the heartache is the daughter I always wanted.