What does the term disability mean to you?
When I was a child I really thought that people with a disability had a much poorer quality of life and felt sorry for them (but that’s a lack of understanding for you).
Now, I think that it means people have different abilities rather than none. I still believe that a disability (depending on the type and severity) often makes life more challenging but I also know lots of people who are incredible with a great outlook on the differences that define them. Of course, I know plenty of people who dwell on their disabilities and use them as an excuse or reason to feel sorry for themselves. But this is people in general. There will always be those who embrace the life they have and there will be those who mope and milk the hand they’ve been dealt. I don’t think disability makes a difference to that, it’s a personality thing.
Who is the person that you care for?
I care for my son Harry. He’s twelve now (a twin with his brother Oliver) but functions around 2 and a half years old.
If you don’t mind sharing, what is the diagnosis?
Harry was born with a very rare cranio facial condition called Goldenhar Syndrome. He was born with no eye, eye socket, ear, nostril and a short under developed jaw. He’s also got significant learning disabilities and non-verbal autism.
how did the diagnosis make you feel?
Devastated. I’d been told that everything was fine throughout my pregnancy and so to be told the diagnosis of Goldenhar on what should have been the happiest day of my life was horrendous. I was in shock, I was convinced that I had caused his condition somehow and I was terrified that I might not be able to bond with him.
His autism diagnosis affected me less really. His behaviour and habits suggested it to me anyway and with a history of autism in my family I wasn’t surprised although I still felt responsible.
What does it mean for you as a person ?
It shook my very understanding of who I was and I believe that I went on to struggle with undiagnosed post natal depression and possibly post traumatic stress as I vividly relived the moment we received the diagnosis for years after. My marriage broke down and after six years I went on anti-depressants after feeling like I just didn’t want to be here anymore.
Yet at the same time, having and loving Harry has made me such a better person. More empathetic, understanding, I appreciate things much more and feel utterly blessed to have him. I marvel at the way he sees the world and all that the offers. I’m a different but a better person now.
What tasks do you have to do on a daily/ weekly/ monthly basis to support your loved one?
Harry needs help with toileting, dressing and feeding. Mobility wise he’s fine (in fact get him in a toy store and he resembles the love child of Usain Bolt and Road Runner) but he has no depth perception with him only having one eye and no stranger or danger awareness so I have to be with him at all times for his own safety.
He has operations and procedures in stints. So, he’ll have nothing for a year and then 2 or 3 procedures so then I am at Alder Hey children’s hospital, 50 miles away for his operation and recovery. It’s tough to see him go through it and its hard being away from Oliver too.
How has the disability impacted the other members of your family?
Oliver is Harrys fiercest protector and adores him but at times he does feel frustrated and resents the fact that we cant always do the things he likes because Harry is either unable to play with him or has a melt down at times so we’ve had to abandon our plans. Saying that, Oliver is incredibly compassionate and understanding. He’s an old head on young shoulders and as much as I am incredibly proud of him it also makes me a little sad to see him miss what he’s never known with Harry when he plays with his step brother and sister.
how do you manage family/General/work life?
I was a teacher for many years but Harry only slept for about 4 years and in the end, I left the profession I loved because there was too much pressure and work at home coupled with a lack of sleep and the impact of Harrys operations and recovery. For a couple of years I was involved with Network Marketing which gave me some lovely rewards like free holidays but now I supply teach when I’m needed and have spent the last year finishing off the book of our journey together.
Have you ever received negative public perceptions?
People can differ in their reactions to Harrys face. When he was younger and I spent time at play centres, other young children would openly stare, follow him around and even cry and run off at times. As he’s got older and had operations to give him a prosthetic eye we get less intense reactions and children just looking puzzled as they try to work out why his face looks wonky lol.
As I have built a following on social media we have also experienced some trolls who call Harry some horrendous names like ‘ an abomination of God’ ‘ freak’ ‘ugly MF’ and Im often told to ‘kill it with fire’.
how did you deal with this??
In the early days I hid away if I’m honest. In the end, I realised I couldn’t keep living like that being terrified of all the stares, points and whispers so I simply stopped the buggy and introduced Harry to other children. Once they had their questions answered they trotted off and I was left feeling astounded that it was that easy! Now, I pre-empt and encourage questions knowing that the majority of stares and points are just curiosity.
With the trolls, I try not to react as that’s what they want. I report their comments and accounts but when I have blocked them in the past they have gone on to create new accounts purely to send me private hate messages. It’s a game to them so I only block if I feel its particularly offensive or threatening. I know they are cowards feeling all brave behind their keyboards. I have no doubt that they wouldn’t say a word to my face and to be honest I’d rather invest my energy in my boys than worrying about them.
If you had a whole day to yourself, what would you do with the time?
Read a book and do some writing. I love to lose myself in a good book but rarely have the time. I’d probably also have an hour at the gym so I didn’t feel too guilty about eating my own body weight in cheese and crackers while I was reading.
Do you receive support in your role as a carer?
My family are great and my partner is fantastic. My boys dad, Mark and I aren’t married now but we still get on really well and parent well together so I’m really lucky in that respect. I’m my own worst enemy in terms of accepting help from agencies until I desperately need them. I feel like it’s my job to cope and hate to look like I’m failing (I know it’s only me who sees it as that but it’s how I feel) It’s not helpful and I am trying to accept help sooner.
Any tips or advice you would like to share?
Be honest – talk about the feelings you have, no matter how terrible you feel for having them. They will eat you alive otherwise.
Believe that you can cope – take it one day at a time and try not to get lost in the bigger picture. There are often more questions than answers there anyway.
Try to find the humour where you can – life is better when you’re laughing. Try often. You deserve to be happy!
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