Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?


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Update on seizures

Well, I cannot believe it has been 22 days since I posted about my daughter’s seizure.  I did talk to her neurologist, or rather her father did.  He thinks it was the problem getting her medicine from the pharmacy and that once she was back on it regularly, she wouldn’t have any more problems.  So far, so good.  22 days and no more seizures.  That was still scary – and somewhat discouraging, in that her seizures are controlled but definitely not going away.

Sigh.  Well, she was diagnosed with a form of epilepsy that she won’t grow out of so I suppose it really shouldn’t surprise me.  Still, you can’t help being disappointed.  I suppose that somewhere in the recesses of my mind there was a small, flickering hope that it would go away.  I know that’s not rational, but there you have it.  As a mother, I can’t help it.

At any rate, life is going back to normal.  We’ve all had a bad cold for over a week now.  That is getting really old, really fast.  If I could just curl up and sleep for a day or two, I’m sure I’d recover quicker, but of course that isn’t going to happen.  This weekend was restful, but of course there was still laundry, grocery shopping, etc. that had to be done.  Ah well.  It is what it is.  I’ll get better any way, but I would really LOVE to sleep.

Right now that is what I want for my upcoming birthday – sleep!

There’s not much else going on.  Due to the health issues, my daughter was out of school all week.  I don’t think she’s gone a full week to school this year, between being sick, holidays, and snow.  Sigh.  I hate that she’s missed so much school – and it makes getting her into a regular schedule difficult.  She did make it through the day today, which was wonderful – and she ate a good dinner, which made me happy.  (LOL, it is the little things that please me these days!)

 


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Rain, rain go away…

And come again some other day…sigh.

It feels as if it has rained or snowed since January 1.  I know it really hasn’t been that bad, that we’ve had nice days too, but wow.  I am just so TIRED of wet, grey weather.

On a brighter note, the National Walk for Epilepsy in Washington DC is next weekend and we are going as a family!  Should be quite an adventure – all four of us, loose in DC!  Our little princess should be ok in the hotel room, but it has been a while since we’ve stayed in one.  I just hope that the weather improves between now and then; we’re all recovering from being sick last week.  The last thing we need to do is go up and walk three miles or so in the rain…

Things to do before the walk:

  1. Laundry
  2. Register with LGS Foundation
  3. Check mail/email.
  4. Water indoor plants – goodness knows the outdoor plants are wet enough; they might just float away!
  5. Pack – make sure we have chargers, all of our medications, and my Kindle.

In other news, I’ve decided to take a break from the online classes that I’ve been taking.  I just haven’t been able to focus and put the work into them that they called for.  If you’re going to do something, you really should do it right.  So…while the family is sick and I’m tired, I’m taking a break.  Sometimes you just need to do it.  I’ve found something else to focus on – actually several things.  I am listening to TED talks and doing Zen Doodles (something like Zentangles).  *I started to include a picture but it occurred to me that that would involve using someone else’s artwork, so I will have to wait for that, until I can scan MY OWN artwork.

I find these doodles very relaxing and creatively stimulating at the same time.  I can’t explain it.  LOL, my eight-year-old looked at my latest work last night and said, “Oh, Mama, that’s BEAUTIFUL!”  Made me smile!

 


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The National Walk for Epilepsy 2013

Whew.  That was quite a day.  The National Walk for Epilepsy 2013 in Washington, DC, was about three miles.  I swear it wasn’t that long last year…lol.  I hope that I will be better prepared next year – in a number of ways.  It was a beautiful sunny day – but it was nippy.  I really hadn’t thought about that – silly me.  And this year, we walked along the Tidal Basin – beautiful but windy.  Well, it was a WONDERFUL experience – both of our children went for the first time this year; Alex wore a shirt saying “Epilepsy – I LOVE my sister” and Sophie wore one that said “I ROCK Purple for Myself”.  My parents-in-law and my mother and stepfather were also there.  They (and my husband and I) wore hats with a purple butterfly with SOPHIE embroidered on them.  There were thousands of people again, all ages, races, and so forth.  It was SO encouraging to see all those people and to see visitors to DC stopping, asking questions, and taking pictures.  I even saw a crew filming 🙂

After that, my parents took our children back to our home town, allowing my husband and I to go have lunch with some friends.  That was absolutely fantastic.  We went to Maggiano’s – a wonderful Italian restaurant – and talked for quite a while.  Then we visited a phone store – and my husband and I finally, FINALLY replaced our six-year-old phone with a smartphone.  AND my husband decided to stop being an oddity – he has been the only tech guy (SQL database architect) with seven computers in his house but NO cell phone.  He now is the proud owner of a smartphone.  Only took me six years to convince him it could be useful.

We got home last night at 10:30, completely happy from the walk, the food, the visit, and the new phones – and passed out.  The day was exhausting.

It is truly an incredible feeling to participate in something like the Walk for Epilepsy – I highly recommend it.  I cannot even begin to put it into words – and to have people join us for Sophie means so very much to us.