Other parts have appropriate outlets, this one does not.
I want to be anonymous because those who love us would not understand when I say that there have been times when I thought “if she does not make it out of the ICU this time, maybe that’s a good thing.”
I’ve often been told I should write about how I survive. So I am. Too bad I have not told those who said that I should write that I am writing. How screwy is that?
I am done mourning the loss of the normal son and daughter I never had. Maybe talking about this part of my life will help others on their own path.
Many of my accomplishments don’t add to much.
Multiple engineering degrees and I don’t know the length of a wheelchair.
“Outstanding Professor of the Year,” voted by the student body, only to become an anonymous voice that does not even reach the level of noise in the blogosphere.
Surrounded by friends and so many women that there are many jokes about my “harem,” yet often feel so alone in this battle for us to survive.
Started a coffee company, but the recession hit the same day, thus I am drinking A LOT of coffee. What else to do but blog when up all night buzzing?
With other websites and another blog, I beat the “No Child Left Behind” laws and forced them to leave my daughter behind. A battle we won, but just for one young lady so far.
I hope one day Oprah happens across the blog, invites me and “she who must be obeyed” to be on the show, and the world changes its attitude towards the severely disabled.
At the end of the day, it is a way to transfer the fears, the shit, the craziness to some other place. Hopefully off the front of my mind so that the dreams at night are of the next 24 hours, not the last.
I don’t think that this blog is a means to an end, a way of getting what I want (as mentioned by Barbara in a comment). That is because
I don’t know what I want
Besides normal kids, I pretty much have always been able to get what I want.
This blog won’t give me the answers I want, because there is not a choice when you leave a comment for “Type of god you are” only your URL and email and I don’t believe S/He has a website. I wonder why that is …
If I help one person, one parent, friend, teacher, professional, one person to understand that much more, to get a hint on how to deal with their child, or even if I help one person put their shit into perspective, then it’s worth it.