All I can say is, “Boy what a night last night.” Keith and I typically go to bed, what might seem for most people, rather late. It seems like if we are starting to get ready for bed by 11 o’clock or midnight that it is an early night for us. We both are such night owls as we usually are going to bed around 1 or 2 in the morning and sometimes even later.
Well, last night did not start off as a good night once we got upstairs and settling down for the night. As it was, I was very tired. It’s around 1am and by that point the littlest thing seems to be irritating to me. For example, my husband setting the alarm for the time he did (we’ll leave that for another story :p). It’s all jumbled up together now. It was stuff that just seems stupid now (aren’t most fights this way after all 🙂 ).
Ultimately, the conversation ended up on Mari. It has been several months (at least 3 or 4) since we have had a real conversation about MarMar. We just hardly talk about her anymore. I guess that is what happens in life when you don’t have that person around you everyday like you used to. It’s not that you forget about her, as I am sure you can imagine we don’t. It’s just they are not here to talk about.
I ended up going down the road of talking about how I felt like I was a bad mom. Mari’s autism was so severe and hard to deal with sometimes. People always thought I had such great patience when they saw me with her. I always felt my patience was on its last legs. It was always running thin and towards the end of her life in those last couple of years it just seemed to be growing thinner and thinner.
There were times when she would do things like writing on the walls or pulling down her pants to go potty right in her bedroom instead of letting me know she needed to go to the bathroom so she could use the toilet. In these moments, I would just needed a break like counting to ten or even just putting her in her room for a little while so I could calm down. Sometimes I look back and wonder how I even did it.
It is hard for me to admit this but I feel sometimes like I have so much regret. I don’t like to tell people this because immediately they will say to me that I have nothing to regret. I was a good mom and things like that. However, I feel like such a selfish person sometimes as all I wanted when she was alive is to have my own time ALONE without her. I still remember the day they called me from her school asking Keith and I to come and pick her up as she had diarrhea. All I know is I wanted that time for me and I did not want her home yet. 4th of July weekend was coming that weekend and so she was going to be home for the next four days. I just wanted that “me time”. But as parents, are you supposed to have that “me time” anymore? Isn’t it all supposed to be about your children until they can be on their own? And in my case, Mari was never going to be on her own with her autism the way it was.
Well, guess what happens: she gets sick and dies. I know technically that it is not my fault she is gone. However, I feel like I brought this upon myself for ever thinking this way to begin with. You might be thinking, “Well every parent has their moments of wanting alone time.” I know that logically it is not really my fault but it doesn’t stop those guilty thoughts that keep creeping into my mind. I guess the bottom line is I miss her so much.
As I sat there talking to Keith I realized that now it was the 16th. We are exactly one month away from Mari being gone for two years. Can you believe it’s already been two years? It dumbfounds me. Unfortunately for me, it always seems like around this time every month I always seems to have a hard time. In the last couple of months everything has been ok for the most part. However, this month is different. For one, I have been sitting here really working hard on this site and getting it better organized. In doing this I am rereading all my writing. It is bringing up a lot of how I have been feeling over the last couple of years and rebringing those feelings to the surface.
As I said a moment ago, we are exactly one month away from Mari being gone for two years. Our lives have had to continue on. Keith and I both feel guilty for being happy with the fact at how much easier our lives are now that Mari is not here. You have to be a parent of a severely autistic child and then to have that child pass away to truly understand where we are coming from. We talked about it again last night how if she were still alive that she probably would have been institutionalized by now. Keith said that it still kills him to even think about it now but we both know that she was becoming a hazard to herself and her safety was our main concern.
Unfortunately, life likes to throw you a curve ball when all you want is fast one to be thrown straight at you so you can better control the direction your life is heading. So much for what we want as life is filled with many curve balls that we would like to avoid all together.