I get so frustrated sometimes in my unclear moments. It seems to come out in anger or a stutter because I am not used to being physically disabled. Being trapped in this body that it almost 35 years old is so new. I am normally a very logical person and know how to help myself. But consistent care is the key to living your best in the land which I was born. That is literally no ones fault though. I am so used to defending myself from being hurt that I have a difficult time asking for help when I need it because the help that I have gotten has been in an area that isn’t kind from a health standpoint. There are so many things that I want to accomplish but I am not certain if those are possible. I hope so! But I am just not sure. I feel as if I open my mouth or move too much I won’t have the energy to keep going. But I do. Somehow.
When I was a baby I had my fourth brain surgery. It happened to have been done by an exceptionally brilliant surgeon who knows that my brain is complex. He gave my 34 years of being able to do literally whatever I wanted. I didn’t always use that time to the best of my ability.
When people in your world see a baby struggling to survive and then make it and thrive they are so thrilled that they forget about the complex brain and hydrocephalus. But that’s okay. I belong to God. He knows my brain in its current condition and my body too. He can do with it whatever He sees fit.
I am not upset at anyone. If I had the energy to speak I would shout that, but that isn’t a good idea in the condition this body is in. I would just like really great care and people to be kind. I would like to live so that I can do what I’ve always wanted. Belong to God and be happy. I don’t care what I look like.
Cheers,
Lisa