Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

The Monster We Live With (Epilepsy)

The Monster We Live With (Epilepsy)

November, in case you somehow missed it, was epilepsy awareness month. Our journey with epilepsy began on a hot August morning in 2011; until that day the thought that my child might experience a seizure had never crossed my mind.

Over the years, we’ve learnt how cruel this monster really is. My beautiful baby boy, once so smiley and with a laugh that absolutely melted my heart, has had to fight every day of his life. It isn’t just the outward seizures you see, it’s the impact of near-continuous epileptic activity in his brain playing havoc with his development.

It’s seeing him fall asleep during the day from sheer exhaustion, because the monster doesn’t stop just because its night time. It’s seeing the frustration in his gentle face as he struggles to control his limbs, only for another random muscle spasm to cause his arm or leg to suddenly jerk. And it’s holding my baby, long after he’s outgrown the baby stage, gently stroking his hair and whispering that it’s ok, that he’s safe, that we’re with him, as yet another seizure rips through his body.

Epilepsy is incredibly cruel.

However, it is because of this awful disorder that we’ve met some of the most amazing people in our lives. We have an amazing community of friends. Our boy has people routing for him from all corners of the globe. He is, quite simply, our hero. He refuses to give up.

Once the seizures have passed on for the time being he simply gets back to whatever it was he was doing, be that boardgames, LEGO, or watching TV. His smiles are all the more precious because of how much epilepsy has stolen from him. I would be lying if I didn’t say that epilepsy has stolen far too much, and I’d give my last breath if it meant my son could be cured of this disorder; but much as I wish it were me and not him it isn’t possible.

There are still so many misconceptions about seizures and epilepsy in general; no, it is not contagious. He cannot control when the seizures happen. Despite his physical limitations, my son’s mind is as sharp as flint. Having seizures does not mean he is not intelligent, or that he doesn’t want to do things. We just have to be more creative and work harder to make things possible. He’s an appalling flirt. And he is our everything.

If you don’t know seizure first aid, please go and learn it. It’s very simple but it could save someone’s life; it doesn’t matter if you don’t know anyone with epilepsy. At the very start of my son’s life, we didn’t either.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

View Carolyn’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...