Sunday 25 September 2011

Snakes in the Water

The trouble with writing a blog is that I always think I need to 'sort things out' in order to formulate a clear message that is worth sharing. In the midst of what feels like chaos, what is clear - what is worth sharing? Well, I realized this morning that I had better ditch that precondition to writing.

In some ways, the situation is normal in our household. All the optics reflect stability, organization and calm. Our boxes are all unpacked and pictures are hung. Nicholas is loved and very well cared for in his new home.

But I was awake last night from 2-5am again and my dreams were of giant snakes in our lake water at the cottage. Why do I feel frightened and under threat? I think there are two reasons. One is that I had no idea how I would feel with my boy living apart from us. I know that everything we did was right for him and for us, but at a cellular level, my heart and soul are objecting. My sister Karen suggested that my feelings reminded her of when she stopped breast feeding. Such longing for closeness, yet the power of reason forcing separation. I think it's not a bad analogy, but the difference I feel is that I don't know if Nick is safe because I can't check on him in the next room.

Nick is doing quite well, but a few days ago, his bloodwork results came back with a toxic tegretol level. Tegretol is one of his medications that stops seizures. Nick's level was far too high and the strain on his liver showed in another very inflated marker. So, of course our wonderful-hero GP advised lowering the dose of tegretol. So far, we've had four nights of the lower dose, but on average, eight grand mal seizures each night. This morning a note from the doctor advises us to increase the medication back to the old dose. Aside from emailing me on a Sunday morning during his holidays, our 'hero of the community' as I call him, managed somehow to get an appointment with the best adult epilepsy specialist on November 1st (the waiting list is usually over a year). Tomorrow, I will call that doctor's office and beg for an earlier appointment.

Last night, Jim and I attended the annual National Arts Centre gala concert and dinner. Yesterday, I joined the board of the Canadian Centre for Disability Studies. This week I give the AGM keynote to an Ottawa parent group called Families Matter. Now, if only I could sleep. Does anyone know how to get rid of snakes?


Hiromi Stone said...

Hi Donna, you put your head down during the day and just get things done. It's only when all is quiet and your body is at rest that the mind starts going. You're doing the best you can. And no one, including you can ask for more than that. All my love.

Anonymous said...

i read your posts regularly on FB donna, and am ever reminded of hemingway's definition of courage: "grace under pressure."

jane m.

BLOOM - Parenting Kids With Disabilities said...

Hi Donna -- Your reaction to having Nick living away from home seems very natural!

I hope his meds get sorted out and the seizures reduced or stopped.

It sounds like you are very happy with Nick's new home. I would love to hear more about it at some point -- how did you find it, how do you get the coverage you need to ensure Nick's care and quality of life, etc.

I hope you have a reprieve from the snakes! You've accomplished so much in such a short time since getting home!