One of the hardest parts for me about this whole thing is that my dad and I do not exactly have the best relationship. and it has nothing to do with him. it is all me. its probably common among all teenage girls to think their dad is incredibly annoying with everything he says and does, and that he just cant do anything right. that is how i feel about him sometimes. he is always so happy and positive, and i am generally the "glass if half empty" kind of person. that is what a lot of our arguments are about- i need to be "happier." the worst was like 6 months ago when school and gymnastics and everything was very stressful for me, but now we are on pretty good terms. i am trying extra hard now though, especially since i found out about this diagnosis. but sometimes i am just so annoyed with some of the things he does, like the little things such as talking in third person (we are not 3 years old...) and asking really obvious questions that he knows the answer too but just doesnt feel like thinking about. it is always me that starts the arguments, and i am always 100% to blame. it is just hard sometimes for me and i take it out on him. i know i must sound like a terrible person and i feel so incredibly bad. i used to write diaries and talk about how much he annoyed me and how things are more peaceful and better when he is gone away on business or something...i only wish i could take those things back. i need to enjoy and appreciate what time there is left.
and one of the reasons the sadness has gotten so bad with me is because i feel like i do not deserve to be happy and healthy when my dad is such a great guy but he is so sick...i think about how i should not be able to be happy. i lose my appetite completely whenever i am thinking about my dad or anything that will make me sad- like at dinner a lot i have to force myself to even eat a bite of chicken. i always have associated food with happiness since i love food so much, especially snacking (which i cant seem to do anymore..), but now i just always feel empty inside emotionally.
anyways, i get what everyone is saying about telling my parents that i know about my dad. and i will. when the time is right. i know it will need to be soon. i randomly broke out crying in the car yesterday with my mom. i told her i was just really tired. maybe i can find the time at some point in alaska (we are going to juneau, skagway, tracy arm, and then victoria bc, then back to seattle for 2 days).
oh ok but about ALS. so there are new clinical trials and studies coming soon? do they look to be promising? dad's cough was awful bad today, he insists he's fine to me even though mom seems worried. i believe he would have bulbar onset ALS due to the cough and messed up speech sometimes. other than that there are no symptoms though- no muscle twitches or anything (that i have noticed at least). isnt this the most rapidly progressing kind? and are the treatments any good that are coming up?
Sarah