I feel like my blog has been filled with minutia these days -- tales of The Boy and his exciting drawings, videos, poetry and commercial giveaways. Life goes on in the house, though, like always, although we've had a respite, of sorts, from big seizures and all the anguish and despair they sometimes bring. I'm grateful for that.
At least for now, and knock on wood, Sophie is going through a good stage. When I say stage, I mean about a week or so and that's an improvement! We live, quite literally, in the moment and at most, by the day. She is taking her homeopathic remedy and a bit of the white pill, so I'm not sure what's doing it, but I actually don't care. So grateful for that...
Next week, I have a meeting with a case worker who will determine whether we qualify for In Home Supportive Services, a social program here in California that provides respite care in lieu of institutionalization. California, as you know, is a fiscal mess and the services given to the disabled have been cut drastically. While my feeling about institutions is about the same as lying alive in a coffin, when the going gets rough, I do understand why people resort to it. I don't want to jeopardize our chances of receiving this much-needed relief, though, so I won't go into it here. But that does lead me to the reason for the title of this post: My New Mantra. This morning I read on Claire's blog this statement, and I doubt she'll mind if I take it as my own:
We'll jump off that bridge when we get to it!
I've been reading a lot lately which isn't unusual, although my response to the several books I've recently finished is. I think Colum McCann's Let the Great World Spin might be the best book I've read in years. It's a riveting story about priests and prostitutes and New York City in the gritty, dirty seventies. Philippe Petit, with whom I've long been fascinated, if not mesmerized by ( see HERE) figures throughout. I could hardly stand to finish it and am still thinking about it now, one month later. I'm also in the middle of Joshua Ferris' book The Unnamed which is a strange and beautifully written book about a lawyer who can't stop walking. Yes, walking. Miles and miles and miles, to the death. It's a book about neurology and the mind and, above all, marriage. I especially liked this passage:
...The long matrimonial haul was accomplished in cycles. One cycle of bad breath, one cycle of renewed desire, a third cycle of breakdown and small avoidances, still another of plays and dinners that spurred a conversation between them late at night that reminded her of their like minds and the pleasure they took in each other's talk. And then back to hating him for not taking out the garbage on Wednesday. That was the struggle. Sickness and death, caretaking, the martyrdom of matrimony -- that was fluff stuff. When the vows kick in, you don't even blink. You just do.
So that's what's happening around here. (And don't forget to enter the giveaway (scroll down a bit!). I'm drawing a name tomorrow, Friday the 5th of February. You know you really, really want a fondue pot.
Hi hon..how are ya? I loved the passage about marraige..so true..life too though..seems like it just goes in cycles. I hope for you hon that this calm one last more than a week. I really understand that feeling of waiting for the other shoe to drop. Hard to enjoy now when you stress over then. Wonderful Matra...I think I may join you..worry about the bridge when we get there.
ReplyDeleteHugs and take a breather on me!
Hugs, Sarah
Or as I heard one time: Don't put up your umbrella until it really starts to rain.
ReplyDeleteThis was beautiful, Elizabeth and the cycles thing is true. We all know it and I am grateful to be reminded. I find myself cycling in my own marriage moment by moment. Some days, anyway. Today being one of them.
I wish you a continued good cycle with your Sophie and that you continue to get the help you need so much.
"We'll cross that bridge when we get to it" was one of my mother's favorite sayings to me. I was her special needs child. I had polio as an infant (probably one of the last cases in the 1950s). It affected my left leg which had to be braced. When I would ask what was going to happen regarding various things in the future, she give me that quote. I crossed the "bridges" of going to college, having a successful career (but a short one), marrying a wonderful man and "retiring" to raise two amazing sons. I especially liked your post today. I do so hope that Sophie can cross bridges with you and that you find the respite that both of you need.
ReplyDeleteThanks. I needed a new mantra this week. I'm good at jumping off bridges, but not today.
ReplyDeleteAnother lovely post. I'm off after this to buy that book.
ReplyDeleteI really hope and pray that your family will qualify for respite care.
I am catching up on your blog and love it all! I am finding the books tomorrow!! Also, very interested in respite care and support in CA. I am anguished! about the cuts to our most vulnerable citizents...And loved what you wrote about living in (and appreciating) the moments. All strung together into this thing called life. Take care! Fingers crossed that all will go well for you and yours.
ReplyDeleteI so hope you will get the home supportive services for Sophie. If she doesn't qualify than who the heck does? I'm also stealing your mantra.
ReplyDeleteI am so glad Sophie has had a good week. I'll keep my prayers for some Grace with home supportive services, and more good weeks to follow. That would indeed be a blessing. ooxxT
ReplyDeleteps my word to type below is "blesi" - let's take that as a sign
Oh, I so hope that you are able to qualify. We have this service her in Georgia and a friend of mine has loved having it. She has a daughter with Mito, so they are no stranger to seizures. Thus she cannot just leave her daughter with anyone though she has many willing friends who would love to help. Hope Sophie will continue to stay seizure free for at least a while.
ReplyDeleteGlad you liked the line!! I didn't get it that much when I first heard it. We were early on in the game, don't you know...NOW, I get it...I sooooo get it.
ReplyDeleteLove the quote...just love it.
That's something my mom always said! So it has to be a good one.
ReplyDeleteI didn't get this post until now for some reason... delayed blogger ?
ReplyDeleteHow profound all of your thoughts are.
I'm glad to hear you've been reading, having the time, taking the time. I wrote down your suggestions.
and I mentioned the giveaway on my post this morning, although it may be too late, wasn't sure if Friday was the last day for or the day of .
prayers and crossed fingers for all things deserved for Sophie, for you and your family
I have to laugh because I used to say this way back when, and almost to a person not only they didn't get it, but used to correct me and say " you got it wrong, "we cross that bridge, not jump off that bridge". Of course being a foreigner they assumed that I didn't know the implications of one versus the other and I always chose to let them believe that over pointing the real meaning of what I was saying. I guess you could say I jumped off that bridge as soon as I got there.
ReplyDeleteMarriage, marriage...balancing a five pound roast on a teaspoon. Come to think of it, all we really do in this lifetime depends on balance. Here is to yours and may you always know when you should cross and when you should jump off that blessed bridge,
Oh, Allegra -- you really, really get me! Maybe we could hold hands and jump together sometime...
ReplyDelete