Being Me…

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


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And summer begins

Well, things have been fairly quiet lately, which is surprising as the kids got out of school for the summer last Friday.  It looks like it will be a pretty quiet summer for the most part.  Alex and I will take one trip to Alabama to see my stepmother; I’m sure we’ll see some sights and do some swimming, as well as visit family.  That’s the big excitement this summer – no other trips likely.

Tomorrow, our dear Sophie has another EEG.  Sigh.  I know that it is a valuable test, but I hate this process.  She normally is asleep by 9 – I have to keep her awake until midnight.  Then we get to get her up at 5 am.  And she can’t eat anything for 12 hours prior to the EEG.  Fun, fun, fun – there’s nothing quite like a hungry, sleep-deprived child to really make the day fun and exciting.  Sigh.   Ah well.  It will be over before I know it, I know – and I know it could be worse.  LOL knowing that does not make this process better.

Sophie is going to summer camp this week and she LOVES it.  It is a camp for disabled children and adults, so she should be able to continue to go as long as we get applications in in a timely fashion.  They do arts, music, and other activities plus she gets to swim for a while at the end of the day, every day, so she really looks forward to this camp.  She goes three or four weeks every year.  Normally it is four, but I took too long getting my application in this year.

There is also summer school for Sophie.  This year, though, they shaved two weeks off of it.  I think someone, somewhere, missed the point of summer school for special needs children – at least some of the point.  One thing I liked about summer school was that it kept there from being a huge gap between one school year and the next.  Well, now there is going to be a big gap between school year, summer school, and school year.  In addition, she does better with a routine.  With a six-week summer school it was easier to keep her in a routine.  Well, there’s not much I can do about it; I am sure this is a result of budget issues within the school system.


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Seizures, seizures, go away

Sigh.  Five years we made it, five years without a seizure.  Today our daughter had a grand mal (tonic clonic, I think).  SO scary. And so depressing.  Sigh.  I can’t even really put how I feel into words.

After it stopped, we moved her to the couch and made her as comfortable as we could, but she got up and tried to walk to her room.  That was just completely heartbreaking – she could barely walk; her legs weren’t working properly.  I just about lost it at that point.  We got her to her room and she curled up on her bed with her favorite toys and went to sleep for about an hour.

What does this mean?  Are the seizures starting up again?  She was not quite herself for the past few days.  She had several instances where she suddenly started yelling, then crying like her heart was broken.  Were those seizures?  Were they seizure related?  I don’t know.  Some days I don’t know ANYTHING.  Or at least that is how it feels.

I’m going to call her neurologist tomorrow and I’m assuming that he will want to see her.  It has been a while.  It is possible her medicines need to be adjusted for weight change or something.  I guess we will see.  It is just devastating to have a seizure after all this time, even though I always knew it was possible.


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National Walk for Epilepsy, 2016 Edition

National Walk for Epilepsy

Well, we went to the National Walk for Epilepsy in Washington, DC, this past weekend and had a lovely time.  There was a meet and greet Friday night at our hotel, then the walk on Saturday.  Weather could NOT have been better – it was in the 70s and sunny.  Yes, the start to the day was a bit cooler, but since we were walking, it didn’t take long to warm up.  Our family took the Fun Walk (1 mile) but there is also a 3 mile walk (the main walk) which we have participated in in the past.  Hopefully next year we will be in better physical shape and will participate in the full walk.

We found out just how out of shape we were Friday night.  After the meet and greet, we went to get our son something to eat.  Adult finger foods aren’t really his thing so we set out to get something more to his liking.  My husband used Google Maps and found a Wendy’s just a short distance away.  We set out, only to find that the location is an empty lot.  So…we tried another app and found that it was this other direction.  We went that way…and found nothing.  Sigh.  By this point we had easily walked a mile and a half, and it was starting to get dark.  I wasn’t entirely comfortable being out on the streets of Washington in the dark, but well, there you have it.  After a little more searching, we finally gave up and started back.  My poor son was so tired at this point he didn’t even want dinner.  (I should add that he had had a good snack at about 4:30 so it wasn’t as if he hadn’t eaten all day.)  All in all, we walked a bit over four miles on Friday.

Somehow a four-mile warm-up for a one-mile walk doesn’t really work out well if you aren’t in good shape.  I was really feeling the Friday night adventure Saturday morning.  If I had been more awake, I’d have taken a pain killer before walking more, but I wasn’t and I didn’t.  Sigh.  Lesson learned.  We took a cab to the walk because we woke up late and were running behind, walked the walk , and then walked the 1.8 miles to the hotel.  By this time I was REALLY ready to be done.  But no, there’s more… LOL.

After the walk back to the hotel, we checked out and headed out to Sterling, Virginia.  Well, to be more precise, Dulles, Virginia, out near Dulles Airport.  The Air and Space Annex is out there and is a wonderful place to explore.  Among other things, that is the house of the space shuttle Discovery.  It is fascinating to see that up close – it is truly an impressive sight.  And there is so much more to see there.  We spent a couple of hours exploring and then sought out our hotel for the evening.  It felt really great to sit down and relax in peace and quiet.  All in all, it was a fantastic weekend.  We rarely get a weekend away to spend time with our son, one on one, so it really meant a lot to be able to do this.  I think he really had a great time.  I would like to think that he will cherish these memories.