I have a really hard time dealing with the fact that we are a different family than the average family. I miss that we can't do the typical normal family things together. People take this for granted....I have seen it and it makes me so sad.
It is so hard to even just all go to the store together or just dinner. We can't just go family camping or lets just up and take the kids to the zoo or whatever. Everything we do (pretty much) is separated. Jerry will run here or there and then I will run out and do what I have to do, etc.
You can't just take Gracie anywhere...you have to be so prepared with all the seizure meds stuff and feeding tubes and you never know when she is just not going to cooperate and the day just has to come to screeching halt! And yes I know not all kids cooperate, but when a child like Gracie doesn't it's so different. We can't just be out and about and decide oh let's grab dinner out or something...we have to make sure we have the portable t.v. charged or she won't eat and will fuss and scream the whole time. I am sad for Ari and Logan that they can't just experience these little family things.
Not to be selfish...but it is just really depressing sometimes.
d
Friday, February 1, 2008
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