I haven’t blogged for a while, but feel this heartfelt blog needs to be written.
I had never really considered the sadness, even grieving that happens when somebody you have loved and relied on all your life changes overnight and that the security and stability you’ve felt all your life disappears!
My greatest sadness up to this point had been when my Nannie Pat died, just months before my Usher Syndrome diagnosis.
Nannie Pat had been at the heart of our family and had been the most hands on grandparent ever. My memories of her are so clear, my brothers, sister and I spent so much time with her and Grandad Colin. We stayed with them regularly, they babysat for us, we went on holiday with them but looking back probably the most valuable thing of all was she always there for us. Nannie Pat would sit on the floor and play with us, draw with us, make things with us, cook with us, read with us, she really was the best and I miss everything about her.
I still have a great relationship with Grandad Colin but goes without saying he misses Nannie Pat as much or more than I do. Mum says her spirit lives on with us and I do believe she is right but doesn’t stop me wanting that last conversation with her.
This person has been a huge part of my support system, the system that has got me through the difficult daily challenges of my Usher Syndrome diagnosis, of mental health challenges. Supported me through the horror experiences of education and further education, helped me set up my company and encouraged me to be the person I am.
I have taken for granted the love and support I have received and believed no matter what Usher takes from me that love, support, safety and security would always be mine.
This person promised to help me be more independent, something I have wanted for such a long time.
I feel these things are gone and life looks very different.
As a result I didn’t think twice about returning to counselling to deal with my feelings of loss and insecurity.
I remember when my Mum first insisted I needed counselling after the bullying I experienced at school. I had to be dragged there, how glad I am my Mum is so strong to insist and drag me there, I hated her for it, told her ‘I’m over 18 I do not have to do this’ she rightly overruled me and how glad I was as after more sessions than I can remember I found my way forward.
Counselling is not something to be ashamed of but something that shows a willingness to speak and to listen when sometimes you feel you have lost your way - right now that is exactly how I feel.
Usher Syndrome can be very isolating even when you have company, particularly through the winter months when the condition is so much more challenging. As a result I always look to and rely on the support of my family and friends because it is them who keep me going through the more testing times.
One thing I have learnt is people do not ordinarily change beyond recognition overnight, if they do there is something not right and also that it is only the most determined that seek help - I desperately hope you are that person.
Work wise this year has been challenging but also amazing in lots of ways, I have worked all around the world, worked with some amazing Companies and people, met some amazing people and next year I hope to do the same.
Along the way I’ve experienced such a rollercoaster of emotions, the early retirement of my beloved first Guidedog Unis, the anxiety of needing help getting to and from work near and far, the gratitude of having my Dad to help out whilst my Mum was laid up with a broken Ankle, the elation of being matched with Guidedog Isabella.
Isabella, affectionately known as ‘Welly’ has definitely lit up my world and given me back the independence I missed, a huge high for me.
Sadly I end this blog on a low, knowing one of the most special people in my life has gone and not knowing if or when he will return.
I can only say, thank goodness for counselling as this will take a while to work through!