Who Am I? The Importance of Looking after YOU!

 In General, The DS Advocate

As a mum, when I first started hearing people talking about “self-care”, I will admit I didn’t take any notice of it because, let’s face it, I was too busy.

I think most us are the same…we keep doing what we need to do for our families and don’t even think about things we might like to do for ourselves.  In the early years when my boys were younger, every couple of weeks, I was able to sneak in a sleep in.  That was all I needed.  A bit of a sleep in to catch up on those hours I had missed out on during the weeks before.

I loved doing all the boys’ activities and being involved.  I would help at school. I team managed their basketball teams, helped out at footy, and I loved it.  I got a lot out of it.  I was fine.  When Darcy came along, more was added to the schedule, but to me that was fine.  I mean, I brought these guys into the world, so I needed to make sure they got what they needed, and experience all the wonderful things there were for their childhood.  And, I enjoyed watching them learn and grow and enjoy all the wonderful things there were out there for them.

Darcy had early intervention appointments, regular paediatrician appointments, and I also had to learn about how to gain access to all the equipment and therapies he needed.  When Darcy was born there was no NDIS … we had to find organisations that provided funding and we also had to listen carefully to other parents.  Other parents were where we all were able to get the best information.  Otherwise, you didn’t know about what was out there on offer.

As he grew, there was lots of advocating for him and lots of work to make sure he got what he needed as well.  I managed to find a good speech therapist for him and Occupational Therapist, but we were only able to access these every now and then when we were able to get funding.

So, life was very busy, but as I said before, I enjoyed doing all these things with my kids.  To me, that was enough self-care for myself because I didn’t see it as a chore or anything tiring.  Some of the advocating I did for Darcy was hard work, but it was for his benefit, so I didn’t think twice about doing it all.  It was my job.

Although I loved doing all of these things for my boys, and gained so much from watching them grow and thrive, I didn’t realise I was losing who “I” was in all of this.  I had lost Julie and become “Mum”, but I didn’t even realise at the time.   As Darcy’s brothers grew, they didn’t seem to need me as much.  They were becoming independent.   Now, before kids, I used to play netball, do ceramics and a few other activities that I enjoyed, and I had always had a dream of writing a book.  I loved writing and often wrote letters and kept a journal.  When my kids were young, that got put on the back burner because I had other things to do.

Now that Caleb and Blake were older, I found I had a bit more time.  I was (and still am) working casually, and Darcy was at school and the jobs I had to do around the house would get done in good time.   What was I going to do with the extra hours I now had???   I was a bit lost because I had been doing lots of things for the kids and inadvertently had forgotten about the things I liked to do for myself, and let’s face it, I didn’t have time.   And the other thing was, as I had become older some of my interests had changed.

As I said before, one of the things I enjoyed prior to kids was ceramics and folk art painting which I loved then, but I didn’t really want to be heading out to a factory at night anymore to do this.  I did go back to a couple of classes but didn’t seem to enjoy it as much as I did before.   I loved reading before I had kids but couldn’t possibly imagine myself finding the time to sit and read a book even if the boys were a bit older now.

The duties of a mum at home seem to keep going until they’re in bed.  By then, all you want to do is flop on the couch.

As Darcy started getting older, I also started getting him involved in activities he liked to do.  I loved watching him grow, develop and enjoy himself so much.  I really got a huge amount of enjoyment from this and was quite happy in that environment.   I also work 5 days a week (a couple of evening shifts) and so my time on my own was catching up with friends sometimes and doing the chores around the house.  Sometimes sitting and watching a movie, but not really that often.   As the years have gone on, I’ve realized that self-care is really important … to find out who I AM again and work out what I have a passion in, for a start.

Exercising is something I’ve started enjoying a lot more as I’ve become older and at the moment, I try to make sure I walk a few times a week.  I have also signed up to do things like the Mother’s Day Classic and other events like that, because I actually discovered I enjoyed running.  I did work out that self-care wasn’t just about sitting down and relaxing, it was about finding yourself again and doing the things you love.

I started thinking about this dream of mine of writing a book that I had pushed to the back of my mind and when an opportunity came up in 2018, I ran with it. I stepped right out of my comfort zone and went along to a half day workshop to find out how I could achieve my dream.  Fast forward to September 2019, and I am the author of The Unexpected Journey, Embracing the Beauty of Disability.  It is my story about our journey as a family with Darcy.  Since becoming an author, I have found a new passion and am on my way to creating a group/platform where I can support and advocate for families of children with disabilities.  I also now have a burning desire to raise awareness to the wider community about disability.  Society has come quite a way with regard to this, but my god, there is such a long way still to go.  My self-care now is writing short stories to share on social media about our son and other topics related to disability.  I have begun making some great connections with groups that I hope to be able to share my passion with.   I love sitting down now at my computer writing and learning. There is so much to learn out there and I’m loving every minute of it.

Covid-19 has helped me to have more time to get into a position where I can do this for myself.  I’ve started reading again and currently I’ve attended a few online workshops like rock painting and other things like that.  I’m loving that I’m making sure I do the things I want to do again.  I also do get that quiet time each night before I head to bed.  In that time, I’ve been able to start reading again.  We lead very busy lives working, keeping connected with friends and looking after our families.  Many of us don’t think we need any self-care because we do get such enjoyment from those things, and the time it takes with advocating and finding resources for your child when they have a disability is very exhausting and time consuming.  We don’t have the time or the inclination to think about what we might like to do, because we have to devote so much time to fighting for our children.  Once you start making a bit of time for yourself though, even if it’s only 10 minutes a day to start with, you do discover how important it is.

It’s good for your mind to be able to just be you for a while.  And, it is SO IMPORTANT.

I totally understand, when you have a child with extra needs, you are passionate and busy fighting for them and finding services for them.  And you don’t have time to worry about yourself because your focus is on your child.  I have been there too, and I still do this for Darcy, but I have also managed to find that time for myself as well.
Once you start to make sure about YOU, it’s amazing how good it makes you feel.

If you are having trouble, reach out to someone.  There are Carer Organisations everywhere that you can talk to about many things.  They can also help with services for you or the person you are caring for.  And they are very good at helping with self care.  There are also people like me and even your friends, that you can reach out to for a chat and to try and find out how to start finding you again.  It’s important that we are there for our families, but it is equally important not to lose yourself while you are doing this.  Make the time, even if it’s just 10-15 minutes a day to do something for YOU!  Even if it is just sitting outside, a quick walk, reading a magazine, whatever it is you like to do, make sure you do it.  It is a bit of a time out to be refreshed again.

Don’t forget YOU in your family…if you’re not functioning properly, then the family is not functioning properly.

Links to contact Julie Fisher:-
http://www.juliefisher.com.au
https://www.facebook.com/theunexpectedjourneybook/

For more information or support – enquires@makingchromosomescount.co.uk

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