Being Me…

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


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Walking with our girl

Well we tried to go and participate in another walk for epilepsy awareness today, three of us. (Our son decided he’d rather go to Grandma’s so off he went.)  It was a lovely day, and we got a great parking spot.  With our girl and her backpack/harness, off we went at 1:50 pm.  The walk was scheduled from 2-4.  Silly us, we figured it would actually start at 2.

That was really optimistic. We walked to where people were gathering, at one of the covered picnic areas, and we walked back in forth near by, trying hard to keep Sophie occupied and happy.  The weather was beautiful, sunny and breezy.   For about half an hour, this worked but then she noticed the water – a big, beautiful “lake” (small by lake standards, big by pond standards).  Off she went, pulling hard on her harness.  After we stopped her and got her walking back in the correct direction, she started expressing her displeasure.  We figured we had really pressed our luck – keeping a two-year-old in a 9-year-old’s body happy for half an hour while you walk back and forth is no mean feat.

So, having done nothing we set out to do other than show up for a walk, we went back to the car, promising her a car ride, and we left.  As we left they were just beginning to talk about starting the walk and people were still registering.

I will say that this experience gave me hope.  She really was happy while we were walking, so much so that she was actually hopping!  I think if we go to another, bigger and better organized walk, she will actually be willing and happy to participate.  Also, we may want to see if we can find one that isn’t particularly close to water, though that is hard to do in our area.

 

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The Walk in DC? More like a RUN for me

Oh my.  There are absolutely no words for our experience at the National Walk for Epilepsy this year.  Mostly, that is because we didn’t make it.  We drove to DC.  We enjoyed the hotel room for several hours.  Then…we went to the Meet and Greet for the LGS (Lennox-Gastaut Syndrome) Foundation.

Now our darling daughter had taken off twice already in the hotel, which had startled us fairly thoroughly.  I keep wondering what we could have done differently, but I am not sure if there is ANYTHING we could have done differently.  After all, we do the best we can, really we do.  Anyway, during the meet and greet, my husband and I kept having to take Sophie out of the main room and walk around with her.  Well, it was my turn and she jerked her hand and ran, ran, ran.  Unfortunately, she ran through the lobby and straight for the front door – an automated revolving door.   If it hadn’t been automated she would not have been able to get through it, but there you have it – it IS automated.  Sigh.  I ran, ran, ran after her, feeling my heart pounding its way out of my chest.  I was close to her, but not nearly close enough.  God bless the valets parking cars.  One of them saw her run out onto the sidewalk near the street and he grabbed her arm, enabling me to catch up.

Seriously.  I took her straight to our hotel room, where we could keep her SAFE, and promptly got hysterical.  I suppose the best thing I can say about that is that I was able to keep my head until it was safe to lose it – my MIL was in the room and was able to comfort me and distract both of our children until I could pull myself together.

My husband and I talked a short while afterward about what to do – whether to stay and try to attend the walk or just head home.  In all honesty, I just wanted to go home after all of that.  (In addition, our eldest started throwing up before his sister did her escape act.)  So…after the three hour drive in the morning, the three hours in the hotel, we drove home.

I slept from the time we got home (about midnight) until 11:30 the next morning, then again from 2 pm to 6:30, then went to bed around 10.  That is all that I want to do right now.  Sigh.

I am sure that we will all recover from this over time, but …wow.

Some days hurt so badly that I cannot even begin to express it.


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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!