It’s been 11 months to the day that Rachel went away. Well, closer to a year now that I let this blog post slip away and stay in draft mode. I’ve been talking a lot with the kids and having conversations in my mind about what I am doing with my life. What kind of Mom I am.
When Rachel was alive but getting worse because of Batten Disease, it became more difficult to leave the house. I was able to get her out of the house but it was really hard to accomplish and we could only go out for very short periods of time towards the end because of the bathroom and she couldn’t bear her own weight long enough to safely transfer from her wheelchair to the toilet. She didn’t really want to go many places because it was hard on her and loud.
In private moments away from Rachel (when she was in school) I would talk to the kids about what we would do when she was gone. It was a shit conversation to have with them. Knowing that their sick sister was holding them back from living life, knowing that I would one day be without my daughter. But I promised them that one day we would be able to go and DO THINGS. We are coming up on a year and I’ve started to fufill that promise.
It isn’t an easy task to get over the mental block of depression and anxiety that I seem to be left with. I shower, get dressed, have clients, a part time job and I take pretty good care of my kids. But something about getting dressed and LEAVING the house for reasons other than working at Amazon or buying food is really hard. I wish I knew why. This is the house where my daughter died. I hate it here and I definitely feel better once I am gone.
I’ve called this last (almost) year “The Gap Year.” A gap year is often how you describe the year after high school or college that young people take to find themselves before taking the next step of college, graduate school or getting a real job. In my case I need to get a real life. I don’t want to leave my dead daughter behind in this process and maybe that’s why I have been tied to this house. Before she got really “sick” and affected by Batten Disease we used to go places, take road trips, visit amusement parks and go to the movies. (Movies with a lot of dialogue so she could follow along).
I’ve started a small list of things I want to do and places I want to take the kids to see. But the gap year isn’t over yet and the weather still mostly sucks. If you have any suggestions for things to do this summer, please comment below.
It has been 347 days since she died. It is so hard to believe.
The featured image is the kids on St. Patrick’s day. Green sprite.