Yesterday was a hard day for our world with Epilepsy. Emotionally, Laycie is going through some things. She’s growing up. Hormones are taking over as she develops and with that comes lack of understanding and uncontrolled emotions.
Laycie can’t tell me what’s wrong. She says she’s not sad, she feels loved, and she enjoys her life. She’s overwhelmed with this growing up thing and I can see that as her Momma.
Laycie was diagnosed with Epilepsy at 4 months old. She’s taken medication every day, twice daily for 10 years now. She’s tired of it. She’s tired of the battle, of the meds, of not being a normal little girl who can just go play as she pleases and doesn’t need medicine to keep her healthy or alive.
Without medicine Laycie may end up having a seizure. Taking her off has not been an option yet. Even with the medication, there is too much seizure activity to do so.
Laycie doesn’t understand this because she doesn’t “see” the seizures. She doesn’t “remember” when they happen. Her brain wipes clean and she has no recollection that anything has even happened to her.
Her big question is “why her” and why have her siblings seemed to have outgrown this but she has not? Why does she still need medication when no one else in the family does? Why does God allow her to still suffer when she has done nothing wrong?
Big questions for such a little girl. Questions that I honestly cannot answer for her. Questions that break my heart as her Momma.
I’m forced to tell her that if she doesn’t take the med, she can become sick, maybe even die, and that my Momma heart wouldn’t live without her here with me. A piece would be left missing forever. That’s a harsh reality for anyone, much less a child.
I apologize that she has to take these meds and remind her that I know how she feels because I’ve had Epilepsy for 39 years just like she’s had it all of her life of 10 years. Words are limited because how do I even begin to explain all of this to her when I don’t have any answers myself. Prayers for her healing go unanswered and I’m left with little hope that this will ever go away for her.
She asks when she’ll outgrow it and I have to honestly say, I do not know – she may never. She may never be able to go without meds. She may never be able to drive. She may never have a normal life like other kids her age.
I have spent many a day wondering why God allows her to continue to have to deal with this. Most days she has control but lately, I see how it’s affecting her emotions, her sleep and her appetite. I see her struggling to understand and wishing she was just normal. As her Mother, I’m here for her. As her advocate, I fight for her best treatment every day.
Epilepsy life is not easy or for the faint of heart. We are truly warriors in an unseen battle every day. Fighting back when the hard days happen.