I was sent an e-mail from a friend that I thought was really a touching story. Until we had Conrad I looked at the world in a completely different way than I used to. Although we don't believe that Conrad has any mental disabilities he does have delays in other ways. He didn't start walking until he was over 2 years old and still doesn't really run he kinda just trots and he is also tube fed still.
He will eat a little by mouth now (when he is at school) but still not enough to sustain himself by any stretch of the means. It is so hard to answer some of the questions we are asked in regards to his eating like the most common one, When is he going to start eating? unfortunately no one can answer this question we will just have to wait until he is ready. The other famous question is, Why doesn't he eat? Well besides having an oral aversion we don't know this answer either.
Sometimes I feel like people think we have not tried hard enough or done the right things by their reactions. Although they are are not saying this sometimes I feel like that may be what they are thinking. Maybe I'm just thinking to much who knows.
We were at Wall mart today and Cj started retching and when he does this he starts gasping also and will sometimes spit out white foamy spit. (gross) Anyways, this woman gave me a nasty look then looked at him and asked if he was sick. NO!!! like I would take my sick kid shopping at wallmart. I realize that she was not aware of his situation but sometime I get tired of having to always explain it I suppose because I don't understand it myself sometimes.
I'm not sure why her reaction affected me so much because normally it doesn't bother me. Maybe I was just extra sensitive today.
Here is the e-mail address I hope it will work I tried to post it but couldn't figure out how to post the video. http://www.selfadvocacy.com/offensetaken
I suppose the point to my babbling is that we should never judge another person because we don't know where they have been nor do we know their situation.
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I hate those questions too. I really get tired of people expecting Kaden to eat...thinking he just doesn't want to. I always feel like I have to defend him and say "IT'S NOT BECAUSE HE DOESN'T WANT TO...HE CAN'T, (leave us alone about it already)." It is very hard to explain to others, like you said, when you don't understand it yourself. I get frustrated sometimes with the doctors too because I want an answer. He was doing so well before that last (or maybe second to last) surgery...whenever it was that they repaired his fundo. Now he will barely to water. Ok, now I am rambling...but I so understand where you are coming from.
About the lady at Wal-mart, I was just talking to Nate today about people staring at Kaden (b/c we went out to eat). I told him that we should start acting like we are talking about them and then look at them at the same time. He of course kind of defended them...I know, I understand that people are curious...but geez look don't stare. Anyway it was cute because when we left Kaden went to the table behind us and waved bye and then begin to wave bye to every table on the way out...he got a lot of awww's out of it!!!
There I go again. One more thing, I promise. Nate and I were thinking if you guys can we should meet in Topeka with the kids again within the next couple of weekends and hang out. Nate will have the next two (not counting this one) weekends off. Let me know what you think. Ok, I am done with my novel.
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