I've been struggling of late when it comes to updating the blog. The problems is that this forum really strains to fulfill several purposes and at times the needs of each are at odds.
This is MY blog. For most of its life it was a running blog, though in reality it really started off as more of a self- involved relationship blog. More recently it functioned as a photography blog. All of it was a record of my life and my personal struggles and triumphs and whatever advice or cautionary tales I could pass along to others interested in those subjects.
And now? I guess it's more of a caregiver blog or occasionally a mommy blog (though, for the record, I DID run today). The problem is that these sorts of blogs are about people other than myself, so every entry involves at least a modest intrusion on someone else's privacy.
Besides that, it no longer really seems like an appropriate forum to just vent or gripe and complain, even if sometimes that's all I really want to do. I want to stay upbeat and positive and use the blog to share heart-warming and encouraging stories about life with MS, but lately all I want to do is just rage against the unfairness of it all. Even when there are hopeful developments to report (she's more engaged with other people, her verbal communications are easier to understand!) they tend to come with trade offs that hardly seem to justify the gains (she keeps hitting and pinching people hard with no warning and tells me that people want to kill her and that she hates me).
So, what's left is to just try, try, try to appreciate the fleeting and occasional moments of tenderness and connection that do still happen. Nathan's hugs that sometimes calm her spirit for a minute (as I hold my breath and stand ready to intervene if she suddenly grabs him too roughly) or the heartbreaking apologies and tears that sometimes come after she's said or done something particularly hurtful.
"Did you mean to hurt me mom?"
"But why did you want to hurt me?"
And in a very small, defeated voice, " I don't know..."