When your child is "different" you hear a lot weird comments. Most of the time they are well meant-sometimes not so much. I don't think I am alone in this. In fact, I know I am not.
I spoke to a friend of mine yesterday who also has a daughter with Rett. Her daughter is 28 and was my first introduction to Rett in September of 2001 when I started my job at the Regional Center. Avery was not even a twinkle in my eye then.
Anyway, fast forward 14 or so years and here we are both parents of a daughter with Rett. We are chatting after they met with our communication specialist in clinic. We reminisce about the diagnosis and how different it is now to hear those words "your daughter has rett syndrome". Back when her daughter was diagnosed, they were told to start planning her funeral-she would never make it past her teens. I mean can you imagine? We were told by that same doctor "sorry, she will likely have seizures and scoliosis, maybe a feeding tube- good luck with that" (not verbatim but thats the gist-oh and she referred to Avery as "the victim" I kid you not). Now, if parents get lucky with an educated physician, they are told about drug trials and reversals and hope.
So that is where is starts-dumb comments from Dr's. Then you get friends who say things like "better you than me" (well meaning but bad sounding), "at least you won't have to pay for college/wedding/prom" (idiotic) and then a lot of "how do you do it's". And then new friends that ask you incredulously "she goes to school?" (massive eye roll)
The only way to answer the how do you do it question is with this: "how do you not? its your kid"
Today we were at an event celebrating the life of a good friend of Red's who passed away 10 years ago from a brain tumor at age 29. I walk up to Red who is talking with the father of one of his friends who doesn't know us well. We have met before but we see them maybe once a year, if that. Turns out they are talking about Avery and how she is doing at school with half her day in regular ed. I walk up and say hello. This man looks at me and says something like "i can't believe everything you have had to deal with. that is heavy stuff. we were just talking about life and it was all great and then BOOM, it went downhill" I think he meant it to come out differently but it irked me.
I said to him "we are doing what anyone else would do" and then I said: "our lives are so much better with her in it" and he says "that is a nice thing to say" and I say "it's not a nice thing to say, it's the truth"
and it is. we aren't dealing with it. you deal with traffic, taxes, assholes, and bad weather. You don't deal with your kid who is disabled. you embrace, accept, love and have gratitude. and that should not be the exception, but the rule.