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| Downtown Los Angeles, 1/16/14 photo via thewire.sheknows.com |
No sooner had the ink dried on the two-week proclamation of Sophie being seizure-free for two entire weeks, then I received a text from her teacher at school that one occurred. That was Wednesday afternoon, and yesterday was a bust -- many seizures all day long, the subsequent clamminess and then the combined out-of-it-ness and agitation.
Small sigh.
The sigh is small because Sophie went two weeks without a seizure! I'm going to attribute the breakthroughs to the full moon, the fires burning just outside Los Angeles (the picture above, although not mine, is what most of us saw all day yesterday and then,late in the afternoon, smelled), the incredibly dry air, Santa Ana winds, small earthquakes (so far) and Oliver's Cold That Sophie Might Be Catching.
Medium sigh.
In the meantime, my record of meeting bloggers in person and adoring them stands as perfect. Christy Shake of Calvin's Story was in town and stayed with us last night. She is as lovely in person as she is a beautiful writer online, and I felt as if we were old friends. We talked and talked, ate a delicious dinner at a Korean small plate place in Beverly Hills -- tiny Brussels sprouts, roasted with tiny dried prunes, zucchini and peppers, a seafood pancake with salty dipping sauce, a salad of avocado, tiny figs, crispy rice and pomegranate dressing, and whole grain pot stickers with chicken -- and then talked some more back at our house before going to sleep. I am so grateful for these online relationships that morph into real-life ones.
Do you need a sweet laugh? Read John Hodgman's New Yorker essay"Downton Abbey" With Cats for a grand one.
Oh life. We can never really know what's coming up, can we? Good or bad. The factors are just too numerous, plus, sometimes miracles and sometimes rain and sometimes fire and always- every month! at least once! a full moon to mess it all up.
ReplyDeleteTwo weeks without seizures means there will probably be another two week period without seizures in your future, and then maybe three weeks, a month, and then maybe there will still be a seizure now and then, or full days when it feels like all progress is reversed, but your know what? Small sigh. Three steps forward, one step back is still two steps forward. Now go look at the red picture, look into Sophie's eyes, and know that she is emerging. It is happening, though not perfectly. Perfectly doesn't really exist of course. I love your small sigh.
ReplyDeleteI have fire anxiety. Afraid of being stranded away from my mom when I'm with Dan. Afraid of the opposite. It's so dry everywhere. It's no surprise Sophie is feeling it, too.
ReplyDeleteMay a new two week period (or more...dare I ask for more??) have begun yesterday.
ReplyDeleteI just (finally) started reading Anne Lamott's newest book "Stitches" and it was the first thing I thought of when I saw that Sophie's two week streak had ended. There's something about the way she finds grace while simultaneously challenging the shitty, unfair things that sometimes happen that reminds me of the way you live as well. Finding meaning and humor in small things, continuing to put one foot in front of the other and stitching together good and bad, sad and happy to create a stirring quilt of life. Much love to you all.
ReplyDeleteRooting for you, rooting for you, rooting for you....
ReplyDeleteI am sorry to hear about Sophie's seizures yesterday. I am sure that her poor body would be quite sensitive to even slight changes in weather and environmental conditions. If I get a migraine the minute our weather changes, I can just imagine how it is for her little being. The great thing is that progress has been made and I hope that as she is weaned off of other medications and her immune system gets stronger, Sophie can go longer and longer without the seizures. And as I write this I recognize how easy it is to wish and how hard it has to be to live. i hope you know how much everyone truly cares about you and your beautiful daughter. Sweet Jo
ReplyDeleteWell, all I can say is "crap!" about the seizures. CRAP. And yet, that doesn't take away my joy that Sophie - and you - have had TWO WEEKS of freedom from them. I am holding on to hope.
ReplyDeleteAnd I dearly hope that your trip to Seattle will keep your wonderful streak of bloggers-to-real-life friendships going. I can hardly wait.
Yes, let's blame it on the fires and the Santa Ana winds and the small quakes. Here's hoping for many more seizure free weeks. Sending love. x0 N2
ReplyDeleteI'm going to wait for my copy of the new yorker to read that - something to look forward to!
ReplyDeleteso happy about those two weeks!
I saw that New Yorker essay but I haven't read it yet. DAMN, I am so sorry the seizures are back. Perhaps this will prove to be some kind of blip. Who knows.
ReplyDeleteThat smoke! Holy cow! Such an apocalyptic photo! LA always seems on the verge of some kind of apocalypse, though, doesn't it? It's part of the character of the city.
I positively having fun with each little bit of it and I have you bookmarked to take a look at new stuff you blog post….Traffic School in Los Angeles The risk of road accidents is increasing day by day and this is mainly because of an increase in the number of vehicle drivers. Almost every 3 out of 5 people have their own personal cars they use daily for traveling purposes.
ReplyDeleteMy record of loving the bloggers I actually "meet" is also 100%. I can hardly wait to meet you live and in person one day. Start your Things to Talk About list today, just so you're ready.
ReplyDeleteWhat 37 paddington said….
ReplyDeleteI'm with Carrie, and so glad that I have had the privilege of dining with you IRL. May there be more of those evenings, and many more (longer) seizure-free periods.
ReplyDeleteholding your hand and small sighing beside you and Sophie
ReplyDeleteholy crap....what a photo of LA!
so pleased to hear of your success meeting blogger friends, and sharing such delightful moments. I am so glad they are there to uplift you
This is my third attempt at commenting on yoru post. Blogger hates all my browsers. I found your blog several weeks ago searching for preeie and other special needs bloggers.
ReplyDeleteI'm so sorry Sophie had htis many seizures, but glad she was two weeks free from them. I really hope your idea that it was the full moon, fires, earthquake etc. was right and she had no more seizures.
As fo rmeeting bloggers IRL, I blog in English and live in the Netherlands, so I have only a few local readers. I hav emet people IRL whom I'd met on forums and that experience has been mostly positive, thugh not 100% so. I'm gla dyour experience of meeting fellow bloggers has been 100% nice.w