Epilepsy- the stages of grief: Denial

Even though Aggie has been having seizures since last fall, there is still a bit of unreality to it all for me. Some days I feel like I see what is going on and I am handling it. But other days are more of a struggle, especially if we are considering doing something new to adapt to her disability, or considering another risky drug, or talking about surgery. My instinct is to resist, and my heart cries “Are we really talking about brain surgery? WAIT a minute- she was JUST fine!”

For example, some days Aggie is incredibly oral- constantly chewing or licking everything, and I mean everything. It's weird, it's gross, and it has the potential to drive me bonkers. Apparently this is common with epilepsy in the temporal lobe and related to anxiety. Apparently this is probably more of a compulsive need than a trainable discipline issue. Apparently they make safe chewable necklaces for children with this problem. But my four year old princess wearing a slobbery necklace all the time? Wait just a minute… she’s not really that bad, and it’s not all the time, and she was JUST fine! Like five minutes ago (ok last fall.) It feels like I just turned my head for one minute, she was just fine and now she is not. Like I am half expecting to see things snap right back to normal if we just wait... just a few more minutes… maybe she will be just fine again.

I guess it is the same kind of thing people go through after a loved one dies suddenly or someone gets a nasty diagnosis… We stare in shock and amazement- stammering "they were just fine, how can this be?"

Death and sickness are everywhere, and yet we are always so shocked when they come near us. Why is that? We feel good at this very moment, so we expect to tonight, and tomorrow, and a few years from now. We are receiving life in full measure at this very moment, by pure grace, and because we have been given it for however many years we think it is ours to keep forever. Our kids come out of the womb healthy and we expect them to stay that way.

Then in a moment things change. Our eyes are opened, and we see how fragile we are. And we try desperately to close our eyes again, to return to that sweet, safe dream.

But there is no safety at all, absolutely none, other than in the hands of our God.

Other refuge I have none, hangs my helpless soul on Thee
Leave, ah leave, me not alone, still support and comfort me.

All my trust on Thee is stayed,
All my help from Thee I bring

Cover my defenseless head with the shadow of Thy wing.

(Jesus lover of my soul, TLH 345)