I am sitting here in a quiet house (unless you count the dishwasher running as noise) and have a few minutes to do a bit more of an update.  I still can't figure out how to resize and upload pics to this site from another website.  I can do it from my PC, but that has been acting funny and I don't trust it.  I talked with a friend tonight who is going to help me set up a "real" blog where I can embed pics and links right into the posts.  CB has been good for us up until now, but I am ready to have something a bit more "web sophisticated." Stay tuned for that.   Don't worry, I'll still do updates here.

Now that we've had a bit of time to decompress from our trip, we can say it was a good one.  We saw many fun things, touristy, but fun, took many pictures, and really enjoyed our time as a family. Griffin says his favorite thing was swimming, although he loved the caves and reptile gardens.  I'll spare you all the nitty gritty details. You can e-mail me if you want more specifics.  

Reese has found a new normal, once again.  His gagging and throwing up episodes continue from 1-8 a day.  They are shorter and he recovers fairly quickly once they are done.  He has thrown a different seizure into the mix as well after which he gets sleepy and what people call "post ictal" which is after seizure haze.  These are happening up to several times per week and we'll just watch them.  We're down to see Dr. D next week, so we'll see what he says about this new development.  He seems to be happier and more "there" once again. He looks at us like he's really seeing us when he's on the floor and we talk to him or when we are holding him.  It is so hard to even guess what is happening in his little brain.  Some days I think he's doing things to get a response, but I think the "noise" in his brain cancels out everything that he learns, so we don't always see the same response again.  It is obvious to us that his response time is very, very slow, but if we give him time (a lot of time), he seems to be doing little things purposefully.  That is really cool.  We must just be patient.  

I mentioned before that we are having a garage sale next weekend. It's taken me two years to get to many of the boxes that we had when we moved.  Some may say it's laziness, but, as so much of our life has changed, it is not a simple task to clean out stuff.  Today I cleaned out the last of the boxes, in them, I found cards that accompanied gifts that we got when Reese was born saying "Congratulations on your beautiful boy," "What a blessing," "We are so happy for you."  I knew these were in one of the boxes, however, it was still so difficult to be hit with this overwhelming memory of when we thought things were normal.  We went through G's boxes of toys that Reese will never play with.  As we clean out stuff, it is a constant reminder of what we will never have with Reese.  It was not a pity party today, there is relief in knowing that all that stuff will be gone, but as with most things, there was lots of sadness and a huge sense of loss.  It is this sense of loss and grief that accompanies most things in our every day life.   There are times that it is more acute and times that I don't think about it until after the fact.  I was talking with a little boy in the hot tub at the campground that we stayed at on our way home from the Black Hills.  His name was Michael and he was delightful.  He turned three in March, two months after Reese did.  I didn't really think about it when I was in the conversation, but afterward, I realized that is what Reese would be doing.  I miss those conversations with a three year old.   I miss the curiosity that Reese would have right now.  I miss the incessant "why?" questions.  Yes, I enjoy our snuggles and our connecting moments, but what I really want is more.  

I've shared this quote before, I think.  It has become one of my favorites. 

I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.  
--Gilda Radner