Gentlemen

A was recently weaned off a heavy med and is so much happier as a result. Smiling. Laughing! Things we haven’t seen since A started down this path, taking anticonvulsants, well over a year ago. Over a year ago.

It’s hard to explain the weight of this return. To not see your child laugh for that long, and then to suddenly witness him enjoy spontaneous, genuine hilarity. It happened on the weekend and we don’t even know what was so funny. It just kept bubbling up and out of him, over and over. Moments likes this give perspective… of course there are benefits to meds, but there are real sacrifices involved too. And as parents, we must continuously weigh these two things.

Our long shot hopes are that with clonazepam out of the way, the ketogenic diet might work better, as I’ve read less med interference can improve its effect. The medical world seems to move so quickly tho, expecting change suddenly, and making changes immediately if seizure control isn’t achieved. The Dr. would like us to increase a new drug that A’s on, currently at a low dose. But we have learned to not react so suddenly, to give it time. The process should be more gentle. Always, let’s be gentle. There are nuances, subtleties, and so many endless unknowns within the epileptic condition, that it’s so easy to lose sight of things when moving quickly, especially the little changes which can be so telling. Or the big changes, like laughter, that can shake you out of typical compliance.

So much learning has happened over this past year, a pretty rough year. So much good, grounding, calming knowledge has come to me, in different ways – through reading the experiences of others, through educating myself about A’s genetics, through living A’s ups and downs, through practicing compassion, patience, mindfulness, and through our family’s unwavering love for and joy in each other.

I feel an inner shift becoming more definable, as it continues to gain focus. I hope writing here will become more a part of that process.

By the way, the audio podcast thing is still in the works. I created an episode (or two, or four) but it didn’t feel quite right. Sorry for the false start. It might end up something I just put out there, and experience its growing pains publicly… less trying, more doing.