I turned down the offer of a hospital bed. It represents too many difficult things in my head. Adam and I are looking into an adjustable bed for upstairs instead. We are getting some home care PT to teach us how to transition from one location to another now that my legs are much weaker and much less cooperative. The PT gave us a gait belt so Adam can move me without killing his back. Mary is also going to try to order us a Hoyer lift.
In my mind the big conversation revolved around the feeding tube. Now that I am starting to have some difficulty swallowing, I am going to try to eat foods that are softer and smoother - smoothies, yogurt, etc. - in order to alleviate choking risk. They want to do the procedure in awake anesthesia, not on a ventilator, so my breathing muscles need to be strong enough to handle that. Just because the feeding tube is in doesn't mean I have to use it all the time. Going back to clinic in two months to reevaluate. I predict the feeding tube will be in this summer.
There were lots of other conversations that revolved around hardware for my ipad attachment, stretching, eyegaze, and much more. All productive and informative. And I walked away from this appointment feeling pretty good and mostly positive. And then...I start to think. I start to think about the implications of feeding tubes and bipap machines, of talking technology and Hoyer lifts, and it all becomes too much to bear. So last night I cried (wept is more accurate) for the things that I will miss or never see, the moments that might happen without me. I cried for my beautiful children, and my devoted husband. I cried for my parents and brother and all those who love and care about me. And then I just sat and breathed.
One year ago yesterday I began writing this blog. This post is the 100th piece I have written. I went back yesterday to reread the first blog post, to see where I was physically and emotionally, to reflect how far I have come on this journey. My first post was questioning whether or not I was disabled. And though now I definitively am, this is what struck me about what I wrote: