“How is Samantha?”
I never answer with ‘she is good’ or ‘she is sick’, I always preface my response with ‘today she is good’, ‘we’re having a rough time of it today’.
Because our life changes like the direction of the wind, what is comfortable one day is painful the next. A protocol that works like a charm one week just might not work once we hit Monday.
We have no control.
This variable lifestyle has made me a tad nutty.
And a bit superstitious.
I knock on wood. Seriously, if something is going well for Samantha I will say, “Well we have seizure control today, knock on wood.”
If wood is not available to me from where I am, I will stop the conversation, I will get up, find a door, or a cabinet, any piece of wood and knock on it. If I can’t get to wood, because I’m holding Samantha or caring for her, I will tell the person I’m conversing with to knock on wood.
And I’m serious….knock on wood.
When Samantha was in PICU, a friend dropped off her son’s lucky blanket that he had in the PICU. Another friend brought in a stuffed monster, because her son has monsters for good luck. We have crosses, angels, messages, stuffed animals, prayers, amulets, charms and lots of wood knocking.
We live in a world that tries to control so much. We know the weather five days in advance. We flip a switch and we have light, heat, cool air, water....
But when it comes to our children and their illnesses, we really don't have a whole lot of control. Their little bodies are calling the shots.
So, like our ancestors, who didn’t have 24/7 radar weather, who looked to the horizon and asked I wonder what today will hold? Will it be calm? Will there be a storm? Will my crops survive? Perhaps we need a rain dance. We too approach each day looking to the horizon, wondering if we need to prepare for the next storm. Wondering what amount of knocking on wood, lucky blankets and monsters will help our precious little Peanuts make it through another day or at least make us feel better, feel as though we have some tiny element of control.
And yes, I have made up own anti-seizure dance, while of course, tapping on some poor piece of maple.
What is your superstitious 'thing'? What do you do for an element of control?
When Heather is not 'knocking on wood', you can find her at Samsmom writing about life with her precious daughter.