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A Parent's Story - #EpilepsyWeek

Family playing with “You only need to watch your child have ONE seizure to cause  you stress” on blue background

For National Epilepsy Week, we were sent this phenomenal piece about raising children with epilepsy and some of the genuine and heartfelt feelings that can exist for parents. If you are a parent, guardian or carer of a child with epilepsy, we’d strongly encourage you to read this parent’s story…

2 of my 4 children have epilepsy. When I meet people and I say they have epilepsy mostly the response is sure they don't have them seizures all the time. Let me tell you what goes through my head in that 60 seconds goes when I hear that.

You only need to watch your child have ONE seizure to cause you stress - watching them lose all control; watch the aftermath just once - and you will always know the trauma a seizure can cause. I thank my lucky stars I don't see seizures every day, but I have witnessed too many absences, too many drop attacks and far too many tonic clonic seizures to ever forget.

Have you any idea what it is like to always be waiting - every time the school rings you think is this it? Every time you drop them off at sports you think what if? Every time you go to bed and your beautiful child sleeps beside you, as they both have night seizures, you think is this the night that it takes you from me?

Yes, my children don't have seizures every day. But no, I can no longer relax as I used to. There is this thing that could strike any day or any moment in our world and I always go back to that first time. Every time you think you have made it to a positive seizure free mark and suddenly life kicks you in the teeth. Your life is constantly on seizure watch. You never relax when the kids aren't with you. You can never forget the seizures in your bed, in your arms, in a play centre - the ones that hit them coming down the stairs; the ones where you have to call an ambulance ; the ones when they know they have missed something in their day even for a few seconds but enough to make them panic as they lost a few seconds/minutes of life.

So yes. I am glad I don't see this every day. My heart breaks for those who do - they are the unspoken heroes in the epilepsy community.

But since the day of their diagnosis, my life is on hold. My phone never leaves my side. My life revolves around what if's. I worry how I will sleep when they are older and out in the pub; I worry will it affect their career choices/ability to drive; I worry every time my phone rings; I worry how they will cope when this diagnosis becomes a reality as they get older; I worry how their friends will cope if they witness it; I worry that they won't come out of one; I worry it will disappear for years and I will forget about it and then it reappears. So, there you have it .......I worry.

So, no they don't have seizures every day but please remember - when you say to me at least they don't have them often - in my head all I can think is the 30 plus tonic clonic seizures, too many to count absences and too many drop attacks that I have watched. One of these is one too many.

My kids bring me nothing but joy and some days I just live for the moment. They will never know my fears as I teach them epilepsy is only a small part of our lives and it will hopefully stay that way.
It's not the worst thing that has happened in my life. There are much worse conditions – but epilepsy is the condition that keeps you in suspense, keeps you on your toes and keeps you wanting to wrap them in cotton wool.

However, there’s are positives - it's knowing you can do something for every single person affected; you can raise awareness. You can prove that although you live in fear, you let them live. You don't stop them doing what they want to do - you let them be kids. Don’t let them be afraid - let them do whatever they want and deal later with whatever happens. Enable and do not disable.

Raise awareness. Break the stigma. Pray for a better understanding and a cure. And be thankful it isn't a daily occurrence. And remind them every time it bad as it is. It could be always worse

Remember, no matter what stage you are at on your journey with epilepsy, our team of Community Resource Officers are here to support you as you support your child. You can find their details by visiting the 'Our Local Services' section of our website.