Sunday, May 20, 2012


Yesterday, I was mad (really Im mad everyday, but yesterday I was just more aware of it).  Even though I had a great day--I got to work out (ran 4 miles without dying) and then got to hang at the pool with a good friend, her kids and Nolan.  Red was home with Avery.  And that makes me mad. Not even really sad so much anymore, just mad. 
Avery is too much for the kids club staff to handle at the gym, so she misses out on that.
Avery is too loud and too overwhelmed at this busy pool, so she misses out on that.
And while I was happy to spend some quality time with Nolan and we had a blast, I was still bummed pretty much the rest of the day because Avery couldnt be there.
Im mad that Avery has Rett syndrome and I cant just take her anywhere I want, anytime I want. There is always arranging that has to be done.  Always.  Im mad that I get a pit in my stomach anytime we are invited somewhere-with the kids.  (which Im starting to realize is happening less and less-getting invited, I mean).
Im so mad that she has Rett syndrome and no matter how much we try, she just will not have a typical life.  Im just mad.

And the sunburn didnt help.


Catriona said...

Me too Erica. I always feel it, though some days definitely worse than others. I just want to be able to do 'normal' things. Mad and sad. xx

Koco said...

I feel that way so often Erica. Good to see you getting down and dirty with your MAD though...that makes it pass faster xxx

mj said...

grrrr. and boo.

Carrie said...

I feel the same way today and is the reason I am out reading blogs...

Emma said...

yep, me too. in fact i said similar words just two days ago to my sister : "I just want to not stand out for a while".