Even Jesus Had His Haters

By following back a traffic source, I came across this gem of a site. It seems users post the most awful link of the day, and someone came across my little piece of the net and nominated me. It was three years ago, so I guess I did not win, as I failed to receive my notification in the mail or cash prize. Here is how my nominator described this site:

http://www.myleftwinggirlfriend.blogspot.com/

I went looking for the left-wing analogue of http://myrightwingdad.blogspot.com/. I did not find that. (I suppose it may have been that at one time.) There is nothing here about politics, just one stay-at-home dad's self-pity and little-varnished desire to kill his disabled daughter.

Ouch.

Now, I couldn't care any less for what anonymous guy on unknown site thinks about me, but it got me to thinking about this blog and how it evolved, as well as what I write and how it might be perceived.

I started this blog almost ten years ago. I have always been caught between the creative and the practical, and I wanted to try my hand at writing. There was this new thing called blogging that was getting big, and the tools to do it easily were coming online, so I thought I would try it. At the same time, I had just met the girl that I was sure I was going to marry. The only problem, her political leaning were quite to the left. And I mean socialist left. Her major was in the humanities, so it was inconceivable (at least to me) that she could be anything other than to the right of the political spectrum. Anyone who was studied history knows that socialism doesn't work. It goes against our very nature.

At this same time I noticed that we were having a number of disagreement, some of which were political, some which were due to the differences between men and women but all of which, when you are in love, were foolish. I am not creative enough to write fiction, I needed to write about something that happened to me. I thought our differences were humorous enough, when viewed from a bit of a distance, to make some mildly amusing stories and so this blog was born.

Of course, as we got married and had kids, this blog evolved with my life. After the birth of our twin daughters, one of which is severely disabled, politics, which I still follow fairly closely, lost some of its importance. This blog came to be more about me and the things going on in my life. Being a stay at home dad and having a severely disabled daughter, I thought I might have a certain perspective that others might find interesting and could benefit from my experiences.

Self pity? Maybe. I am a bit too close to it to be an impartial judge. The reader can decide.

Little varnished desire to kill his daughter?

The last thing I want is for my disabled daughter to die. I cannot help but wonder what life would be like for me, for her and her twin sister, if she was not disabled. All the special moments twin girls could share. I look at her and see all the potential that could have been but was not to be. And why? What did she do? She is an innocent little girl who has never, nor will she ever, harm anyone. Why did this happen to her? The strongest emotions I have towards my daughter is love, regret for what happened, and guilt for what I should or could be doing to make her life better.

Kill her? No. But her death is something our family has to face. Her spine is so curved and her breathing so laboured, that every morning when we wake up and check on her it is possible that she may have died in the night. She will never get better. There is nothing anyone can do for her, short of some miracle science fiction medical breakthrough. (I have read science fiction since I was a boy and still hold out hope for her. I follow Glenn Reynolds nanotech links with interest.) I hope that some day, if she can just hold on, medical science may be able to help her.

I don't want my daughter to die. I want her sister to spend as much time as possible with her disabled twin. I want her 2 month old younger sister to know her.

I don't want to outlive any of my children. But every time we have to take her to the hospital, in an ambulance and barely breathing, I feel I have failed in my most basic duty as a parent to look after my children. Every time the hospital staff ask me about her DNR status, I wonder what to do. Should we let her die? She is not going to get any better. I can read it on their faces, even if our doctor had not told us as much. What about our other children? She is taking up space and resources that could be for other kids, ones who have a chance to get better. What if another child died because they had no room at the hospital, space that we were taking up? But if we let her go, is it because that is want is best for her or is it because that is what is easier for our family? She occasionally laughs and I think she enjoys school and her classmates. Is letting her go what she would want? What about the rest of the family? There are things we cannot do because of her. What about my duty to the rest of my children?

In the end the decision so far has been somewhat easy. The wife and I are both in agreement. We are selfish, we want her with us, we are not ready to let her go. Also, she is not in constant pain from her slowly dislocating hip. How will that change things, when she quality of life gets worst? What if she is in pain all the time? What if there is a point when the Wife and I don't agree what to do?  Then what?

Even though this blog has been going for nine years, it has  few regular readers. I haven't told my family about it and I take the occasional long hiatus which doesn't encourage reader loyalty. The truth is, I write this for me. As a way to sort through my thoughts. If this wasn't the age where everyone has to be open about their lives, these words would be in a journal in my desk drawer.

So no readers or a million, this blog will still be here. 

And Haters gotta hate.