Dealing with a sick baby is tough, there’s no doubt about that. Anyone who has had to do it can tell you it’s heart breaking, soul sucking and generally bloody hell. I’ve gotten past that though, I’ll keep doing everything in my power to improve the quality of life for our baby girl Gwen (she has a very rare form of infantile epilepsy).
My challenge now is how to explain it to my very smart & intuitive son (almost 3.5). He KNOWS something is going on, he can feel it, yet we’ve not fully explained it to him. I need to make sure he comprehends it so he doesn’t feel left out, angry or any number of emotions to him indecipherable. As you can imagine, our daughters care and struggles are not rare topic’s in our house, my intent is to make him truly understand. I am hoping by writing this maybe I’ll gain some insight as to how better move forward with explanations while simultaneously, maybe help to others who are struggling with a similar situation.
Below is a synopsis of our most recent conversation. If anything strikes you as funny, please remember, even life’s most difficult of situations demand a sense of humour.
Son, you know how your Sis’s not doing the same stuff as other kids right? He replies yes.
It’s because she has epilepsy. Pause, wait. He asks “What’s epilepsy”
My explanation: It’s kind of like when you want to do something but your brain isn’t co-operating, you know what your brain is? (he points to his head) I say; Yes, your brain is in your head, it’s kind of like a computer that controls your body & let’s you think about idea’s, like fire breathing dragons that don’t eat flowers (a story he told me yesterday) it also contains your mind which is less easily explained. Her brain is making illogical connections and randomly firing neurons. So it’s basically making her confused and once and awhile making her body do strange movements. Daddy is looking for a better medicinal solution to help her, we will all help her in any way we can, we love her and we love you.
His response, he looked sad and said “Daddy, I don’t like epilepsy” to which I replied “me neither”
I barely escaped breaking down and freaking out, sure as hell I tell you that! I wanted to explain more but figured that was enough for now. I know this: I am glad I broached the subject with my boy and I will revisit it soon. For now, I will continue stomping towards a future that holds therapy’s not yet discovered and or understood. I hope my son has questions tomorrow, I will be ready to answer them. We will then build a robotic gorilla hand.