How to remain positive when you have a child with epilepsy

(and possibly other disabilities).

This is not about how to parent a child who has epilepsy. I am writing this about how to look after yourself as a parent, and how to hopefully not lose your mind.

A little bit about me.

Bella and RebekahI have three children and I am married to a wonderfully patient man. Our youngest child has epilepsy and she also has other medical issues, however for this story I am going to focus on Me. From the moment our daughter was born she came out screaming, and 9 years later she is still finding ways of challenging us! You can read more about her story here.

It’s really hard not to get caught up in the negative when you are tired. You can often feel completely isolated and have nothing but a barrage of negative comments in your daily lives. For those of us on Facebook, we see daily reminders of negativity in our news feeds, with news articles, people commenting on how difficult their lives are and the general “Boohoo waa waa”, negative rubbish all around us and it sucks us down into a black hole. The thing is, it’s really hard to get out.

When you have a child who has extra needs it’s really hard not to focus on these negatives all the time, and having a constant focus of negativity can make it worse.

I’m not saying to get rid of your lifeline but for some of us the only link to an outside world sometimes feels like Facebook or the TV. We need to change our focus a bit. I’m going to write a bit about how to do it and how to try and find happiness even when the world around you sucks.

Disclaimer: I am not a shrink or a qualified counsellor etc. I am a mum sharing my ideas on how I have found ways to make my life a little bit happier whilst living with a child with disabilities. I do not claim to know it all. I am still learning. I am totally nuts sometimes. I have breakdowns. I am human. I need help too. I have learned that I need friends, a support system and time out!

Firstly, if you think you are suffering depression, changing your outlook will NOT help, this is an illness and you will need medical assistance. Please ask for help! I have been there!

For me, a little over a year ago I found myself in a dark place. People often asked me what was wrong. I always had a scowl on my face. I had forgotten how to smile and then I read an article online somewhere about the happiness project. It inspired me to change. Here’s a link to a similar article with some fantastic advice.

I was able to make other changes in my own life to make the daily grind easier. Here are my tips:

1. Surround yourself with inspiration and beauty.

Have an inspiration wall with quotes or pictures that are pretty or inspiring and uplifting. This could just be on the fridge or next to your computer or in the hall or just in one place where you like to go and read.



2. Smile!

I practiced smiling in the car and everywhere. I must have looked like a complete idiot, but I tried to smile as much as possible, so I wasn’t scowling as much! After a while it didn’t feel so hard.

3. Share positive thoughts on social media!

I posted three good things on social media every day. I chose not to post any negativity, no matter what, and that was hard. I know what it is like having no sleep, having sick kids or having a terrible day so finding something to celebrate was not the easiest thing to do and so I started off small. When it was freezing outside I would write, “Yay! I have a roof over my head and a place to call my home”. I wrote about my burnt dinner and that I was thankful that I had enough money to buy food that week. When I had an enormous pile of washing, I wrote positively about having enough clothes for my family to wear. Little celebrations led to small feelings of positivity and, believe it or not, it was catching! I noticed my friends joining in. I challenged myself to do this for a whole two months and it worked. I love looking back now on the little things that made me happy back then and so I am doing this again this year!

4. Say “YES!” more often

I found that in my negativity I had shut out the world. I had stopped going out and I had become a loner. If someone asked me to do something my first reaction was always “NO!” I then worked hard to change this “No!” to a “YES!” This required some huge “out-of-personal-comfort-zone” changes. I started to attend coffee groups and meet people, “Eek!” I even joined a gym! But you know what? It started to change how I felt about myself and it was all positive. I challenged myself physically and emotionally and I went onto do really exciting things like going up the Sky Tower and walking the Bridal Veil Falls, which nearly killed me on the day, mind you! I encourage you all to get out of your comfort zone and start challenging yourself. Before you say “NO!” think about changing it to a ‘Yes!” You won’t regret the positive step in your new life.

SO how has this changed me? Well! I never noticed at first, but a year on, I think I am more positive. I have lost weight but I have no idea how? I guess in my happiness, I am not eating for comfort! I am pretty sure people enjoy my company more as well, including my husband and the best part of all is, I LIKE MYSELF!

Here is a quote I love:

Free yourself from Negative people
Spend time with nice people who are smart, driven and like-minded
Relationships should help you not hurt you.
Surround yourself with people who reflect the person you want to be
Choose friends you are proud to know, people you admire,
who love and respect you- people who make your day a little brighter simply by being in it
Life is too short to spend with people who suck the happiness out of you.
When you free yourself from negative people, you free yourself to be YOU
and being YOU is the only true way to live!

Remember, the most important thing is to be kind to yourself and in doing so you can do amazing things for your family.

By Rebekah