I know, I know, I keep promising to finish Harrison’s story to give you an overview of our lives for the past 24 years and yet again I'm remaking that promise to you! As these next five posts are in relation to National Carers Week I hope the by the time you've read about my caring role you'll understand why I haven't got round to finishing off the summary of his story. It is on my To Do List and I promise I will get there but I can't say when it will be. Please bear with me because it will help you to understand more about life with a complex genetic condition.
So, this is the first time that I’ve ever examined my role as a carer. When I tell our story, it’s usually about Harrison or specific aspects of his condition, and the impacts on him. Now that I’ve done it, I’m glad that I decided to share my perspective of caring.
Over the next few posts, I’m going to share the presentation that I gave in November 2021 during my participation in the Peer Leadership Development programme. We were allocated ten minutes each, so I only had time for an overview. This surprised me because I really didn't think that I'd be able to fill the time talking about being a carer. However, it turns out that I could have gone on for much longer as you'll realise if you wade through all these carer posts! I’ve taken one slide per post so that I can expand them out and add extra comments whilst still keeping things fairly brief (most of the time)! I've changed some of the original text so that it fits better in this blog. Some of the actual wording that accompanied my slides in the presentation, has already appeared in previous posts. Where this is the case, I'll reference the post title so that you can look back for the full detail, if you wish.
One last point to note before I get started - this is my account as one parent carer for one individual with a genetic condition. All carers will have their own perspective on their role which may be different to mine.
Here’s my introductory slide which highlights the topics for my following four posts:
The man juggling the hoops illustrates my life. Being a carer is just one aspect of it and I can’t explain how I spin so many hoops at once; it’s become a way of life for me. I can honestly say that I don't usually give it a second thought. I was talking to a friend the other day and it suddenly dawned on me the adjustments that we, as a family, automatically make to our daily lives to accommodate Harrison's needs due to his condition.
My message for other families in a similar position to us, is to do what works for you and your family. People may comment and offer their opinions or suggestions but unless they're in the same situation as you (and even if they are, the adjustments may not necessarily need to be the same) don't feel that you should justify or think that you're doing the wrong thing because your actions don't fit into the 'normal' expectations.
In the past I always tried to fit our family in with everyone else. Now I accept that we do sometimes need to do things differently which will have an impact on arrangements we make. Thankfully we have very understanding family and friends.
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