Acceptance and fight

I am starting to accept the uber-vigilance required to care for our little Aggie. This still strikes me as strange as she seems so… normal I guess, during her good times. But she is not like other four year olds who can be allowed to play freely on the playground or the trampoline or the beach. It is highly likely that she will lose consciousness for seconds or minutes once every hour or two- and she falls with her seizures at least once every day. This is not undue mama-anxiety I am fighting- a fall really could cause serious injury or death. So if I am going to allow her to do risky things, (like leave the house) I must stay close and keep watch. (Put on your lace-up shoes, flylady. You are going to work!)

So as I have my morning coffee I often give myself a little peptalk that goes something like this:

Today Aggie will have seizures. Today Aggie will require extra-ordinary supervision, mind-alerting drugs, and emergency preparedness plans. Today my attention will be divided, and the other children will not get everything they want. Today my seizure antenna will be on high power, and my feet will always be ready to catch her when (not if) she falls. Today if we go out in public, we will risk embarrassment and injury. Today letting her “be a kid” will come with anxiety and constant supervision. Today we must live with epilepsy. (And Lord, please give me what I need to live in this world today, and keep working on that better plan for tomorrow!)

Yet we cannot afford too much acceptance at this stage, for Aggie's sake. We must fight for her, become her advocates, do everything we can to get her the best help available. As a friend from the epilepsy foundation forums said to me, “even while you still love the aggie with you, never forget to love that aggie that she was first, or was meant to be, that is hidden in her heart... just hold it as a treasure that is on the shelf... and love the treasure that is out in the open daily...”

So as I get ready for Cleveland, I go accepting that this is our trial at the moment, but I also go with the willingness to do anything, to try anything, if it can help Aggie be Aggie again.

Jesus go before us!