Hate is a strong word. I think we should only use the word with caution. Really think about what we are saying before we say it. But what I’m about to say I mean with every fibre of my being. I hate ARX and I hate epilepsy.

I hate watching what the seizures do to my beloved, precious boy every single day. The way his body stiffens and twists, how he cries sometimes before, during and after. How his lips briefly go blue. How it can take him such a long time to unravel and to come out of it. The fact that sometimes we have to medicate some of his seizures and in effect sedate him. I hate that we have to put all these medicines into his little body every day.

I hate the fact that I feel relieved and lucky that he breathes independently and is fortunate not to have oxygen or a tracheotomy.

I hate watching him snooze peacefully, then be ripped out of his lovely sleep by a seizure.

I hate the damage the seizures must do to the good parts of his brain. I hate the fact that he has seizures that we cannot see. Seizures going on his brain that don’t show physically.

I hate that his epilepsy has been described by his doctor as ‘off the scale’ and the moment a doctor or nurse unfamiliar with him see Samuel move or twitch, they want to medicate him.

I hate the fact that these seizures don’t give his brain a chance to develop and allow him to develop and grow intellectually.

But despite all this, everyday I feel so full of love for my boy, my husband and the little bubble we seem to have created in which we feel safe and normal. I love looking at my beautiful boy and stroking his hands, squidging his cheeks and just generally admiring his gorgeousness. I love Samuel so very much and no damn epilepsy will ever dampen that.

15 thoughts on “Hate

  1. I can fully sympathise with this post, my daughter would take anything up to 25 fits a day and that was with medication. You feel so hopeless/helpless/useless and wish it was you and not them.
    found you through blow your own blog horn

  2. As an epileptic for 24yrs now I can empathise, especially as my parents clung on to the hope that I would ‘grow out of it’ only to be told 9 yrs in that it was genetic & there was no hope.

    I have at times hated my epilepsy but I was raised to lead a normal as possible life, so I hate the stigma & ignorance but embrace the need to educate those so called professionals out there.

    Good luck with your boy! All the best

  3. I am crying reading this. I can understand your hate and wish you didn’t have to live through it. Having a daughter who had febrile convulsions and a wife with epilepsy that is almost controllable, I know only a tiny minute fraction of what you live through daily, but hate that people have their lives tested, stressed and even ruined by such an awful disease.

  4. i understand – i totally understand…
    and it’s ok to hate
    i think that it’s good to hate and to feel angry and to shout and scream and punch and kick (which are all very therapeutic by the way x)
    ARX has taken away the little boy and the family life you once dreamed of and hoped for
    but instead you have Sam, who is so much more than you could ever hope for, who holds your heart in his, who you love so very much and you are right, ARX and epilepsy won’t change that.
    a brave post – thank you for sharing it today

  5. Anything that you can’t control that is hurting your child is a parent’s nightmare. You describe the seizures very vividly. Thanks for sharing what must be a painful part of life x

  6. Pingback: Our Environment Signal Siezures in Our Brains? « The Epigenetics Project Blog

  7. Pingback: Love All Blogs » the altruistic blogging network and showcasing site that welcomes all bloggers » 02-04-12 Love Special Needs Weekly

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s