Alas, I have not been the best at keeping up this blog lately.
I think about it regularly…about what I would like to share with my readers…about what has happened in the weeks since my last post. I just haven’t made it all come together.
But here I am again. And as I write I feel that familiar feeling, an easing of the weight I seem to be lugging around with me these days. I need this space so very much.
Since I last wrote lots of things have happened. The Cute Syndrome Foundation held its first annual fundraiser. We are now just about $3000 shy of our goal of $50,000 for October. I have been making fairly steady progress toward completing my dissertation, hopefully by this December. Esmé’s seizures have been under relatively good control as have her infections, for the most part–this week being the exception with a seizure and sickness. Her kidneys are not in fantastic shape at the moment and we are in a holding pattern with that to see if she needs some surgery to correct her kidney reflux and/or remove some stones. We had a photo shoot in NYC with two of Esmé’s PCDH19 sisters done by Rick Guidotti from Positive Exposure. We have plan for a number of fundraisers with these photos!
Things are pretty good, all in all. But there are a lot of moving parts…and I feel as if my brain is spinning constantly with the next ten things on my “to do” list. I haven’t wanted this blog to be an item on that list…it seems wrong to list it with the never ending list of emails, updates, edits, ideas, and appointments…because while I sort of enjoy the busyness, I don’t see this space as part of that. It is a calm, reflective space where I don’t need to be strategic or orderly. So here I am after so long, just deciding to enjoy writing here…with the full knowledge that I will likely be rather quiet these next months as we announce our grant, as I complete my dissertation, as we get over the questions about Ezzy’s kidneys.
I am trying to practice stillness now and then.
When I rock my girl at night, I stop and just think about the way her little body feels over my shoulder, her breathing changing as she gets deeper into sleep, the little twitches that run through her body, the way her hand holds on to my shirt, even as the rest of her relaxes. Of course, with her being sick these last few days, I have had hours of rocking to contemplate these sweet tiny treasures. I’m not saying I don’t check my email and play hearts on my phone too…but, you know what I mean.
And I know that stillness will lead me back here again and again.