Early on I was reluctant and ashamed to ask for help. But my hand was forced. I had amazing help from my family and best friend in the early days when Violet would scream for 12hrs a day and I physically couldn’t care for Henry too.
As our journey has progressed I have accepted and embraced that as a family we need support now and then. I have reached out to charities and have fundraised for Violet.
Services and support that a layman would assume Violet and is as her family would be readily available to have actually been elusive. I have had to fight, and I mean fight for help.
A blue badge: We were refused. I had to contact my MP and make a official complaint before they quickly changed the decision and awarded us a badge.
Disability living allowance: Violet wasn’t deemed as needing the highest rate for her care needs and I had to appeal this. Involving a huge form, copying every hospital letter and report, getting medical professionals to write letters of support of my appeal. The appeal, once looked at was made in our favour.
You all know how this last year has been our hardest yet. I will give you a glimpse of the side we don’t talk about that often. The hard bit.
In February I collapsed. Exhaustion and stress. My husband found me unconscious at home with our children.
We deal with on a daily basis sleep deprivation, stress, anxiety and PTSD. There are constant worries about Violets epilepsy, her feeding tube and Dystonia.
We are pushed to the brink weekly. We have no respite. I can’t remember the last time we went out as a couple in the evening. Or shared quality time as a couple. We exist as a team of parents/carers. No time for ourselves. Henry doesn’t experience time dedicated to him.
At breaking point, I asked for help recently. I contacted social services, child disability services. I had only stumbled across the fact they even existed! Bearing in mind we have a 3 year old child with profound disabilities and we have meant to have been given signposting support.
The long and short of it is this. I was informed immediately that there are no funds for “direct payments” – where you are given a fund to pay carers to support you.
I was told we could try for something called “continuing healthcare” which is an NHS funded service where carers support Violets needs at home.
I recently went through the application process. Detailing everything that Violet needs for her care, she was scored against a little chart all the way through. It wasn’t pleasant.
We have been declined. Verdict is that Violet is not quite disabled enough to warrant support to be provided.
I have run out of fight. I am running on empty as I have been for the last 3 years. We just want some help. Nothing major, just some support to help us continue to function.
My health and my husbands health is being affected. I grind my teeth from stress in my sleep so badly now that I fractured a molar in two places. I have a back that aches constantly from all the manual transfers and lifting.
I don’t know where this will end but I do know that we will just have to pick ourselves up, brush ourselves off and carry on. We don’t have a choice.